Reader request: parents of children with Brown Syndrome?

· by · in strabismus (misaligned eyes). ·

I received an email from Michelle whose daughter was diagnosed recently with Brown Syndrome (a rare form of strabismus).  She’s looking for other parents of children with Brown Syndrome to connect with.  If you fit the bill, can you leave a comment and I’ll put you in touch with Michelle?

310 responses to “Reader request: parents of children with Brown Syndrome?”

  1. My daughter was just diagnosed today with Brown Syndrome. She is 2 1/2. We will be having surgery next month. We live in Napa, Ca.

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    • My grandaughter was just diagnosed with Browns Syndrome this morning. She is 15 mths old. She will be going back to the Dr. Dec 30 to schedule surgery the following month.

      How did the surgery go for your daughter? The Dr. sounds confident on one hand and then said that the first surgery might not work, needing a follow up surgery.

      Any tips?

      Thanks,

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      • our daughter has been diagnosed too with browns. it is severe but no surgery is needed. she was around 2 then. the doctor had her patch her good eye to make the browns eye work harder. when she turned 6 the doctors couldn’t believe how much improved.

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    • Hello there. My 4.5 has Brown’s and I am at a loss. She experiences sharp pain in her eye and “eye dizziness…”
      Can you let me know how surgery went?
      Any info you can share would be much appreciated. I am wishing you and your family a healing energy.
      Thank you

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      • Hi Meghan,
        My daughter was diognosed with Browns at 16mo. She is now 14 and doing very well. we had 4 eye surgeries as her case affected both eye’s and was very noticable. We did everything over the years from Patching to bi-focal lenses …etc. She is now back in a bi-focal with the cosideration of another surgery to help her retain the vision she has. The one thing about this condition that is not mentioned is that she can not see 3D movies… this really is a big deal for her since it is all the fade these days. Other then that she is a very well rounded Freshmen in High School and avid Softball player. Feel free to reach out if you have any addtional questions or would like to chat 🙂 I know the intial shock can be overwelming.

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        • I am wondering where you had your surgeries done? My son is 4 and it was suggested that he needs another surgery to correct his Brown’s (which he certainly does). The superior oblique is a difficult muscle to get to and his doctor on the last surgery said that this might be “as good as it gets”. I’m trying to find a surgeon that has done a lot of these (which I know isn’t that common since it is so rare). Would you share with me your physician’s name and facility you use?

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        • HI Tanya,
          I was wondering who your surgeon was and where your daughter’s surgeries were at? My son was diagnosed at 18 months and has been recommend to have another surgery (he is now 4yrs old). I’m a little nervous because I know these cases are rare and I want to make sure that I use a surgeon who is experienced. I’m in south FL but willing to travel to find the right doctor.
          Thanks
          Stacey

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      • I am a Certified Rolfer of Structural Integration. I have recently given an appointment to a 10 year old boy diagnosed with Brown’s Syndrome. After just one appointment his symptoms improved by about 85%. I’m doing an unusual work (not Rolfing SI), it’s work I’ve developed from my Visceral Manipulation and other trainings, where I release the fascial strain inside the head which allowed the brain to balance and the strain on his eyes was released. I would encourage you to try this before surgery.

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        • Hi Felisa, that sounds interesting. Can u give more details please about where you work & how this integration approach is used for children with Brown’s? Is it very new
          My son is 5 and his bi-lateral Brown’s is still baffling our specialists as they say it seems progressive or at least changable at each 3mth appointment. They are still unsure if it’s definately Browns coz of these changes. Even suggested it maybe muscle weakness.
          Thanks, Karen.

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        • Karen,

          I have an office in Aberdeen, Washington. Can you get to Washington State? I would love to work on others with this condition to see if there is a similar pattern of fascial strain. If so, this would be a noninvasive alternative to surgery. Does anyone know the success rate with surgery? Has your son had any injuries, accident, falls or a tramatic birth?

          If you would to speak to me more about how your son might benefit from my work or would like to have a free consultation concerning your son’s condition. You can contact me through my website at http://www.therolfer.com.

          Working with Brown’s Syndrome is new for me. However, disease is just that. It’s “dis-ease” in the body and the body has an amazing ability to heal with the right support. This work I’m doing has developed from years of different types of training and a gift for me to be able to do this work. So, I don’t know of anyone else doing this work. I’m sure there must be others but I don’t know of them.

          Feel free to contact me. Felisa

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        • Hi again Felisa…thanks for your reply. We live in England on the south coast! Still im very interested to hear more about this and can I email you directly? I didn’t have a traumatic birth with my son, nor did he have any major falls etc.

          Surgical procedures aren’t advocated
          in the UK as they seem to prefer a
          ‘wait & see’ approach to see if condition
          improves with age and growth as any restriction of superior oblique tendon through the trochlea can be released as children enter teenage years we’ve been told. Surgery seems more common in US from my research & not sure if this is due to more advanced techniques, money or a different approach….?!
          Do u work with patients who have had conditions like bells palsy?
          Is there evidence for success with Browns ?
          Thanks

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        • Hi Carolyn…I asked the expert in Rolfing who posted here and she gave me some advice about contacting specialists in Southern England so sure she could help you with accessing someone in Sydney. Australia, in my experience, is very advanced in such alternative treatments. Hope you find the info and do you have her website?

          Karen

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        • I have a daughter that has Acute Onset Brown’s Syndrome at the age of 13. There was no injury or illness, she literally woke up with it one day. What is Rolfing and how would or could it help my daughter. Since no one has done surgery on an acute onset Browns we are very hesitant to go forward with the only remedy we are being offered.

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        • I am quite interested in what you have wrote about “Rolfer of Structural Integration”. What is it exactly and how does it work with correcting brown syndrome? How do I get an appointment?

          Thanks
          Ali

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        • Ali, I am a Rolfer of Structural Integration but the work I’m doing with Browns Syndrome has originated from different teachings I’ve studied over the years. It is done with the lightest touch, similar to craniosacral and visceral manipulation therapy. The body can develop patterns of strain in the fascia (connective tissue) the pull the body out of balance. This can effect the head as well as the rest of the body. I have had success releasing the tissue in the head which seems to also release the strain or pull on the eyes.

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    • Hey there Margaret.. how was ur surgery.. i think we are heading that route an i am very nervous

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  2. Hello. Our son was diagnosed with Brown Syndrome a couple of weeks ago. It affected his left eye and is only noticeable when he looks up, otherwise he sees well. It was a little upsetting to learn about this, in fact, I have never heard of Brown Syndrome until our son was diagnosed. At this point, his eye doctor wants to monitor him and see him again in 6 months. Any insight would certainly be helpful and welcome!!
    Thanks,
    Anne and Theresa
    parents of Brady

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    • Hi Anne,
      Eli was about 2 when I noticed that as I was standing over him while he was in his high chair both eyes were NOT looking at me. So I of course made an appt for him with the local children’s hospital and he was immediately dx w/Browns. We’ve seen a dr every 6 months since then and he’s almost 14. This was in DE and by the time he was 3 they realized he also had “lazy eye” aka amblyopia in the same eye. So we patched, glasses and did drops for about 2 yrs. Glasses for longer. I was told it was just a coincidence. They also told me they only do surgery once and if the head tilt gets too obvious and becomes a social problem. They have to tilt their head in order to see say the tv or gaming etc… Or he’d have to lie down. So after yrs of humming and hawing once we moved to WI we found a great Dr who really thought his condition was severe enough and surgery was scheduled. However the first one didn’t do much but cause other issues, so he had a 2nd one to loosen the opposing muscle (myectomy) and well now his eye travels when he’s tired of not really paying attention. So we have moved yet again and will be talking to yet another eye dr. I really do not think Eli will agree for a 3rd surgery. So my opinion and only an opinion if it’s mild I’d stay away from surgery and just deal with it. That’s just our experience. Once you enter the surgery world it doesn’t seem to stop. But as long as his eyes are lining up when he/she is reading, which is when it’s the most important then they should be able to function fine. It could get worse over time however. Glasses won’t fix it. this is the only website I have found where it’s actual parents supporting and sharing. It is a form of Strambisus (sp?) where the eyes don’t line up. You didn’t mention how old Brady was/is. But we’ve been dealing with this for at least 12 yrs and seems to be a continuing saga….stay tuned….
      Tonya

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      • I have a daughter who was diagnosed with Browns in her left eye. The first time we noticed her eyes did not line up while looking up was at a very young age, probably 15 months old. After many visits to eye doctors and research on internet it was obvious she has this disease. The doctor we are regularly visiting is a specialist and strongly suggests to try and avoid operations, unless the issue becomes a social problem to the kid, and recommended eye patching (the healthy one) and glasses for correction of her cylinder. Now she is almost 6 years old, even with all these measures taken by us her situation is worse where she now has this eye travel whenever she is tired, sleepless or not paying attention; her eye moves outwards and remains passive meaning she only uses her other healthy eye for focusing. One thing that patching improved is the eyesight, which is now very close to the healthy one, being 90% compared to the healthy one 100%. I really do not know what else to do right now, operation or not? If operation, what are chances of success, if not my concern is of her social life in the future taking into consideration all the pressure from other kids she might face while in school!

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    • I too have this in my left eye. I am in the uk. I had the patches and there was only a 50/50 chance the surgery would work. I am 26 and don’t have any problems with the browns unless I am concentrating on work. As your son grows up it will be less noticeable as he won’t have to look up at anyone.

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  3. Our 7 year old son was diagnosed with Brown Syndrome in his right eye since about 2 years old. It is only evident when he looks up without moving his head upward. He has been doing eye therapy at home for several years including CVS exercise program on the computer. His doctor said today that his depth perception and vision are very good along with good eye muscle control. After pressing him, he did recommend surgery for social reasons (friends, girlfriends etc) and my wife and I are debating. Surgery would not entirely fix the problem but would help. The doctor would lengthen the oblique tendon, but my wife and I have reservations. Please let me know how your children’s surgeries went and how effective they were. Thanks, Mike

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    • Hi Mike,

      I was just curious if you decided to do the surgery? Also, what social reasons would be an impact if it wasn’t noticeable, unless he looked up? My daughter does the same thing and we can’t decide between surgery or not. Thanks

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    • Hi Mike, I obviously can’t comment on your son’s case and of course only you and your wife can make the decision, but if it’s any help for you to know I’m 44 years old and my Brown Syndrome is fairly obvious even on looking up just a fraction. I’ve not had surgery as it’s considered too risky for me and is likely to make my double vision far worse. My depth perception and eye muscle control problems are described by the Ophthalmologist as ‘marked’ but honestly I can say that it has never affected me socially. I have a large circle of friends and have never had any social problems with the opposite sex! You’ll probably find like me, that most people won’t even notice unless you point it out to them. You’ll notice it more in your son because you know about it but the way I see it, if people didn’t want to be friends with your son just because one eye doesn’t move so good, they’re probably not worth having as friends anyway!

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    • Hi Mike,

      Hope your son is doing well.
      As an adult with Browns, I wouldn’t worry too much about the social reasons. My eyes still will go “crazy” at times, and I’ve never had a non-family member say anything about it. (It does drive Mom NUTS though when it happens.) Also, I’ve never had a shortage of friends or social problems because of my eyes. I guess honestly, I wouldn’t want a “friend” who was turned off by my eyes looking funny occasionally…

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      • Hi there,
        I have a 4.5 year old with Browns and I am just wondering if you ever experience pain, dizziness, “eye dizziness” and ( my daughter) says her eye feels fat when it hurts.
        Any info you have or can share would be much appreciated.

        Thanks so much!

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    • hello Mike – I am curious about he eye exercises and how helpful they were. can you tell me anything about this? we are located in teh san francisco area and a looking for an eye doc who will take this approach. so any info on the one you used woudl be helpful – perhpas they woudl know like minded docs in our area?
      thanks so much!
      carla

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  4. My 3 1/2 year old son was diagnosed with Brown’s syndrome yesterday. His is also not apparent unless he looks upward without lifting his head. I have been online trying to understand what would cause this since I don’t think he has always had this problem. The doctor thinks his vision is good otherwise. Our doctor indicated that they don’t usually do anything about it so I’m surprised that a doctor would recommend surgery for social reasons. Especially since, if your son is like mine, it’s rarely even noticeable unless he forces his eyes into an unnatural position. I am curious if anyone knows if this can worsen with age? Also curious to know how surgeries or other treatments have worked. Thanks, Tiffani

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  5. My daughter is now nearly 5 and she was diagnosed with Brown’s Syndrome when she was 15 months. When she looks up or to the right, her left eye turns in. She has had 2 rounds of steroid injections into her left tendon. This has rectified the problem for up to twelve months but the problem has gradually returned. Now she can talk, she tells me it ‘feels funny’ and that she goes ‘cross eyed’ when she looks to the upper right. We are about to contact our specialised again for more advise.

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  6. Hei. I have a son that is turning 9 now in january 2010. He was diagnosed with Browns syndrom in november last year. The doctors has told me that there is nothing they can do to help him and i see here that this baby girl have had injections done. I would very much like to talk to you, i live in Tynset Norway i have not been able to find anyone with Browns syndrom in Norway.

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    • Hei Janne. Jeg er også fra Norge (Langevåg like ved Ålesund) og har et barn på 13 år med Browns Syndrom. Jeg har ikke funnet noen andre fra Norge med samme sykdom og ser at dette innlegget er fra 2010, men prøver likevel å skrive til deg. Vi fikk diagnosen når ho var rundt 3-4 år, men det er først no ho har fått problemer. Blir veldig glad om vi kan dele erfaringer. Jeg vil gjerne høre hvordan det går med gutten din. Du når meg på facebook eller messenger på navnet mitt Helene Helgå. Mvh Helene

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  7. You all my wonder how it could take so long before he was diagnosed with Browns syndrome? Robin was born with this, we all could see that one of his eyes turned in when he looked up, this was not looked at as a problem in any of the doctors or health care personel we went to see from he was born, it was first when he startet school we noticed the problem. He could not read everything the teacher wrote on the board and he had problems with pain in the head and eyes, today the school are bringing in personel that can make the school easyer. He does very well despite his problems and reads and writes as well as the others.

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  8. My grandaughter (17 months)just had surgery on her eye on Thursday January 14th. Her eye was a little swollen at first but that has gotten better. Her normal reaction now is to compensate for the difference since the surgery by tilting her head sideways, before it was almost like she was looking down her nose. The doc said this is a good sign because her brain and her eye are relearning how to work together after the surgery. The actual surgery is to punch a little hole in the tendon to make it stretch out. As it heals the hole fills in and the tendon is now a little longer. The surgery is not a big deal, other than really hard on parents of such a little one. She was groggy for the rest of the day but the Doc told them not to even baby her the day after surgery. The hardest part for a baby I think is to not be able to eat after 6:00 pm the night before the surgery. I will check back in a week or so with results or changes.

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    • Thank you for the update Lora. I’m glad to hear that the surgery went well. Even when it’s “not a big deal” it can be hard for us parents and grandparents to watch. Please keep us updated!

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  9. My 3 year old daughter was diagnosed yesterday, and we’re told there’s nothing to be done for it. Glad to find others who are dealing with this as well. I’m waiting for a call back from our ped to see if he thinks we should get a 2nd opinion, b/c i can’t believe there’s nothing we can do. I’ve seen some articles about the condition spontaneously resolving itself, and will be asking our our docs about that as well.

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  10. My daughter is 8 years old and was diagnosed with Brown’s syndrome when she was 3. They told me that they would not do anything to remedy it until she was older, as sometimes the eye can overcome the situation on it’s own. We have opted not to do anything. She likes being able to make funny faces at people to see their reactions, and it has not hampered her schooling in any way. She was originally mis-diagnosed as being far sighted and put in glasses. Luckily we had a wonderful pediatrician who thought the problem was something different and referred us to a pediatric opthamologist.

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  11. My 16 month old daughter was also diagnosed with Brown’s syndrome just yesterday. My daugther’s doctor, who is very highly regarded in his field, informed me that it is correctible through surgery, however a follow up surgery may be required: due to the fact, that once the muscle sheath is corrected, the overdeloped eye muscle that has been overcompensating for the lack of movement by pulling harder, will probably pull too far to the left after the initial surgery. The surgery, he informed me will be outpatient and (in his experience)the patient usually recovers quickly.

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  12. Hi All.

    My little one (Age 4) was diagnosed with Brown’s Syndome about a year ago after a routine check up for his lazy eye. We were told that the lazy eye is operable but not the Brown’s Syndrome as it is classed as too much of a risk (I am based in the UK). I am now in doubt after hearing people having operations for it. The doctor kept stressing that it would hardly be noticeable in adulthood and should not worry, does anyone know whether this is true? Am I being fed an excuse? We will be having the lazy eye operated on and if the Brown’s Syndrome is operable I think it should done around the same time if this is the case.

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    • Hi everyone

      My daughter is now 23 and was diagnosed with Brown’s Syndrome approximately 6 years ago. When she was a baby I noticed that she appeared to have something wrong with her eye, I took her to a ‘specialist’ and was told that her eyes were fine and the appearance of one looking slightly cross eyed was because she has a wide nose bridge. This was accepted (as we are supposed to trust doctors). Anyway when my daughter attended highschool, the demands of reading, writing, exams etc caused more strain on the affected eye, leading to headaches and sore eyes. This was when a proper examination was undertaken (they thought it was a brain tumor to begin with) so we were actually relieved when they told it was Brown’s Syndrome. Now that she is at university the eye strain she experiences causes her a lot of problems, including headaches and painful eyes. Her periphial (spelling) vision is declining. This has become a disability for her due to the increased demands of academic/reading tasks. (so essentially it has worsened with age due to the increased demands on her eyes (the good one does most of the work). She has been given glasses, which have helped. She takes more breaks when reading to rest the eyes, we are now looking at computer programmes to assist her and lessen the reading load, using software that will convert written information into audio so that she can listen to readings etc rather than having to read it. Voice recognition software may also help, meaning that she can dictate her assignments, rather than having to look at computer screens for long periods while typing. Basically the answer is to find other ways to do things to lessen the strain on the eyes, which reduces the headaches and that feeling of disorientation (similar to travel sickness) that she experiences when she puts too much strain on her eyes. Hope this helps those with younger children to think about ways to assist your children in their learning.

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      • The case of your daughter is the same as of mine, although at my daughter the first symptoms were noticed when she was approx. 15 months old and after many visits to eye doctors she and research on internet it was obvious that she has Browns. During the first examination at a neurologist he also was worried that she might have a brain tumor and ordered brain CT’s to be done which, thank God, was not in this case. This eye specialist I am visiting is the best in my country with large experience, and has told me that Browns Syndrome is incurable because it is directly connected to the brain nerves, precisely third part of the brain. Hope this is not true as I am looking forward to my daughters future, hoping this will be healed!

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        • Niti, Did you see my post? I’ve been helping reverse Brown’s Syndrome symptoms without surgery. My work is similar to CranioSacral in that it is very gentle, lite touch. I’m willing travel if you want to try to get other people together that have eye issues.

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    • Hi Sue, I’m a UK adult with Brown Syndrome and like your child I’ve been told that the surgery is too risky. Like you I’ve seen all these posts refering to surgery but they seem to be mostly US cases so I guess the UK views it differently. My Ophthalmologist told me that she went to a conference where a Brown Syndrome surgeon was speaking. Apparently his son has the condition but his father won’t let him have the operation!

      I really don’t think your doctor is just giving you excuses. Mine’s pretty noticable to me, but honestly outside of my family only on two occasions in my entire life (I’m 44) has it been noticed. Once at school and once by an ex partner. Nobody else ever notices unless I specifically point it out. You really need to weigh the risk of making your child’s vision worse by trying to fix something that I can hand on heart say is a condition that has never caused me any major problems. Sure my affected eye is more light sensitive and more sensitive to cold temperatures. My peripheral vision isn’t as good as other people’s and my depth perception’s not too clever, (so pegging out washing’s a bit of a challenge as grabbing the washing line is difficult) and until the age of 23 I assumed double vision when looking up was normal. But these are all pretty minor things and easily solved by either lifting or turning my head or closing one eye.

      I would be very much inclined to trust the doctor and I don’t think you’re being fed an excuse at all. Hope this helps.

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      • Hi ! I am a french 46 year old woman. At about 6-7 years old, I rapidly developped a convergent strabism which was finally operated at 12 yo. After that, the left eye sometimes ran very high (not the right one)… Then maybe after my studies (the most difficult was not reading, at all, but looking at blackboard … ).I neglected orthoptical exams (I was not recommended to ..) but I did one in 2007: they noticed a large vertical shift between eyes but I felt OK. In feb. 2010, I started seeing double when driving… I had a non-successfull operation of the large oblique muscle (but being too old it is more difficult to solve) …and I have a true esthetic problem ..so I would recommend to check regularly even if you are not bothered by this disease to avoid saiting too lat. I will be operated agan… (other muscles)

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  13. Hi everyone. My son (20 months old) was diagnosed with Brown’s Syndrome today. I’ve never heard of it before, but I’m glad I’ve found this board. I was told that his is not too bad and we will have a check up in 6 months to see how he is doing. I was wondering if anyone had any experience with, or had heard anything about Brown’s Syndrome getting better or worse with time. We would like to avoid surgery if it’s possible.

    Sue B. – Our Dr. (at one of the top Children’s hospitals in the country) told us today that if our son’s doesn’t get any worse he would not need surgery either. That it would not inhibit him at all from having a totally normal life.

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  14. Back again! When my granddaughter was diagnosed with Browns Sydrome at 15 mths, the doctor said was a moderate case. Just one month later that diagnosis was changed to severe, which is why surgery was chosen. (She was literally running into things and falling down because of her vision) It is now 2 weeks later and she has improved quite a bit. She is still tilting her head a little to the side which is much better than the day after surgery. She has a follow up appt. on Feb 1st.

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  15. Hello Everyone. I stumbled on this thread looking for information about Brown’s Syndrome and natural presbyopia and wanted to offer my first-hand experience to you all. This is a long post (sorry!) but thought it might be of interest to you.

    I was born in 1965 with B’s Syndrome in my left eye, though it was not diagnosed as such till I was in my teens, and of course there was really no reasonable treatment at the time. During childhood I too enjoyed making funny faces and quickly adapted to a slight head tilt/chin up posture to compensate for being unable to look up in the affected eye. I am now of a “certain age” and am beginning to need reading glasses. My condition seems very similar to those here who have described the condition as being obvious only when looking up. Throughout childhood (and adulthood too) my particular condition was virtually unnoticed and my brain/eye relationship adapted to overcome very early on. I was an honor-roll student, had plenty of friends, took ballet lessons, and so forth. No social stigma. I continue to have no trouble at all with physical coordination, and the condition has never worsened or become more severe. I’m told surgery is not a great option for me now as I’ve spent so many years compensating, so I’ll just continue to live with it. As I age, I will probably not be able to adapt to progressive-style lenses, so will instead need to keep using readers and soon go to old-fashioned bifocals. For me, this is no big deal, just another aging annoyance!

    All this is to say, for those of you choosing against surgery or for whom it is not available, take heart! As Beth’s doc said, this condition – when it manifests like mine – really won’t interfere with childhood development at all.

    I do have a couple caveats:
    – IF the condition is clearly noticeable when looking straight ahead, I could see how surgery (now that it’s less radical than it used to be) would be suggested. It was fun being able to summon the “googly eyes” at will, but also good to be able to hide it when I didn’t want it to be seen.
    – Also, I was fortunate to have 20/20 vision in both eyes. IF your child needs corrective lenses, surgery for the B’s syndrome MIGHT enable him/her to better adapt to corrective lenses as s/he ages later in life.

    Finally, for any Sesame Street fans out there, we used to say I had cookie-monster eyes, and it made me feel special!

    I hope this information helps you all, no matter what you decide.

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    • I read your post. My daughter is 3 and has Browns syndrome…)Sounds very similar to your case) We notice it when she looks up and to the right. I wanted to know if this will affect her participation in sports such as softball, basketball, or volleyball. I know you have to look up quite often in these sports and I am unsure if she can play these when she gets older….Can you help….maybe give me some first hand insight?? Thank you!!!

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      • Hi Clint – I haven’t been to this site in a while, so apologies for the delay. If your question still stands (or for others who have the same query), please know that I’ve never had any kind of trouble picking up a sport or with physical coordination. As I mentioned to Tami below, I just started playing golf and love it (I’m now 47!).

        At least in my case, the brain/eye connection completely compensates for the inability to look up with both eyes and one of two things happens: either my head moves to keep binocular focus, or my unaffected right eye becomes super-dominant and my brain pays less attention to the image from the left eye, thereby canceling out the double-vision effect.

        I think the latter is a learned skill that becomes honed over time, but even as a young child I had no trouble with depth perception or running into things any more than any other kid!

        Best,
        Margo

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    • hi. margo i have just read your artical on browns syndrome and i am glad to have picked up on your storey my lovely grand daughter cloe just has been diagnosed with browns syndrome untill now i have never heard of this . as a concerned grandfather i was shocked. but was heartend when i read your storey the docters said wait untill she is a teenager she might grow out of it. as it is very mild . after reading your storey i can relax a little more. cheers christopher .

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      • Cheers to you too Christopher, and to granddaughter Cloe as well. I truly believe that those of us with a mild case of B’s have the ability to live life to the fullest without any lasting or significant problems as a result of the condition.

        After reading all the posts here, I feel blessed that my experience with Browns Syndrome is as mild as it is, and hope it is the same for Cloe.

        Best,
        Margo

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  16. Margo, Thank you so much for sharing your insight. My son’s diagnosis was upsetting to me, but reading this makes me hopeful that his life will not be affected in any way by Brown’s Syndrome.

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  17. Margo – Thank you for taking the time to post! Reading your perspective really eases my mind about decisions I may have to make in the future for my son. We are hoping to avoid surgery at least until he is old enough to communicate if the condition is bothersome to him. And “cookie monster eyes” is great for my son who adores Sesame Street!

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  18. My five year old son has had a problem with one eye for a long time. His doctor dr. Miller thinks it is browns. I am trying to find out all i can about it.
    Looking foward to hearing from you thanks Danielle

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  19. My six year old daughter was diagnosed in January as having Brown’s Syndrome. I have researched as much as possible and cannot find much information regarding the treatments or management of this condition. I stumbled upon this thread while again researching the condition. I was shocked, to say the least, that I had never noticed her misalignment. Once the doctor pointed it out, it is VERY prominent. I asked, as a mother, HOW could I have missed this? He said since she was born with the condition, she has learned to compensate by holding her head at different positions. He told me there is really nothing that can be done and that surgery is only the last resort. I have an appointment with a pediatric opthamologist to get a second opinion. I was just wondering if any of your children have complained with pain or headaches associated with browns, as the headaches and pain are why I took her to the eye doctor to begin with. She is still complaining with the headaches on a daily basis. Any input would be GREATLY appreciated! Thanks so much! — Renee

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    • Hi-my son has just been diagnosed with browns he is 2.My son was born blind and was not able to see until he was about 6 months old-the condition was called DVM delayed vision maturation.He has always been a very difficault child,he is a really bad sleeper and cry and screams alot throughout the day.After reading about your child it makes me think that maybe my son experiences alot of pain but as he is only 2 he cannot tell me what he is feeling.My doctor in Australia is going to operate in the next few mnths.

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    • hello Renee, i just found this wonderful line of stories about this rare brown syndrome. My daughter Melisa is now 7 years old and after many doctor´s opinions i have decided not to go for surgery at least for the moment. Most of the results of surgery end up in the need of another and another. but Melisa never had frequent headaches only eye pain sometimes. I loved Margo´s story (Jan 29,2010) because at least it gives me hope in the middle of these endless list of unanswered questions.
      Please, to all of us searching answers LET´S MAKE A LIST OF DOCTORS WITH EXPERIENCE ON THIS SYNDROME. IT TOOK ME YEARS BEFORE I FOUND ONE AND HAD TO TRAVEL TO THE US TO MEET HER.
      THANKS, ROCIO

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  20. Hi! I have just been told that my 3.5 year old daughter has brown’s. Reading these posts has made things fall in to place. I thought the way she looked down her nose with her head at an odd angle and her eyes a bit “off line” was caused by tiredness and a lazy eye. I can’t believe i missed it and feel really stupid. You ask about pain. Several times over the last 2 years she has cried out with pain for no apparent reason and complained of an ouch in her head. I even took her to the doctor who diagnosed congestion! Now I feel certain this is connected because most of the occasions shen this happened she was on the floor playing and trying to look upwards. I am waiting for a second opinion from the paediatric opthalmologist and will certainly be asking about the pain.

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  21. Hello! It has now been one month since my granddaughters’ surgery. It is simply amazing how much of an improvement there is. She no longers tilts her head at odd angles. She is not falling down or running into things. There is still one more month for healing (Doc said it would take 2 months). The only thing that happens now is that her eye goes up a little too high (very rare) when she is looking up. We are very happy with the outcome of the surgery!!

    PS we didn’t know if she was in pain or not because she was not talking at the time of diagnosis.

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  22. I have just read your post about Brown Syndrome and my 5 year old son was recently diagnosed with this disorder but he recommended against surgery. I hate the thought of surgery for him, but in the same breath I hate the thought that he has double vision when he looks upwards. Such a hard decision for a parent to make and I don’t know anyone else with this disorder even though they told me it is hereditary. I hope that everything turns out very well for your family and if you have any advice I would love to hear from you….Thanks Nikki

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  23. Nikki, My son is 3 years old and was diagnosed with Brown Syndrome a few months ago. We took him in just because we noticed that his left eye did not move upward when he rolls his eyes to the top of his head. My son has never complained about it until a couple of days ago when I noticed him looking at me with his eyes turned upward and he mentioned that he could see 2 of me. That is the first indication I ever had of his double vision and I had not realized previously that double vision was a symptom of Browns. Our doctor also did not recommend surgery. Because of my childs young age, he indicated that it is difficult to really get a true understanding of the impact on their vision until they get older and he seems to see fine, but the double vision thing does have me worried. I think we will wait until he is school age and see how things are going and then make a decision on the surgery thing. It is good to hear that Lora’s granddaughter’s surgery has been so successful. It gives me hope that there is an alternative to just putting up with it.

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  24. My son was diagnosed with Brown syndron a bout a year ago…he is turning 3 in a couple of months and we are now considering surgery. The doctor last year said his vision is perfect and to just minitor it. Now, almost a year later it is more noticeable and we just came back form the pediatrician who suggested to go forward with the surgery.

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  25. Hi…My son is 2 years old and just over a month ago we noticed that he we tilting his head to one side when looking at anything. We discovered yesterday that he has Browns Syndrome. The doctor has suggested that we get a CT scan done of the brain since our son only developed these symptoms now. But a another worrying factor for us is that his fontanelle has not closed completely as yet but the pead said that there is nothing to worry about as his growth is normal. Please advise if any of you are also experiencing the same problem. It is comforting to know that we are not alone with this problem.

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  27. My daughter is 23,years old and diagnosed with browns syndrom just yeasterday march 15 2010. she has a lazy eye when she was born. She never had sugery done. she has done very well in school,and in college.

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  28. I took my 11 month old daughter to the eye dr yesterday. I was worried because lately when she looks upward her eyes start to go up then turn toward the sides..It really freaked me out. The Dr wasn’t really familar with it so she called a pediatric eye dr. She said that it sounded like Browns. They are just going to keep checking on her every few months for now. I’ve been checking out all the information I can find on the web and reading everyones posts makes me really think this is what it has to be. After the Dr noticed her tilting her head up to see I realized how much she really does do this. It does help to see that kids seem to do o.k with this but it still worries me.

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    • Hello Melissa. I just took my 11 month old to the pediatric opthamologist today and he thought he may have Browns. It seems to mild but from what you described so similar. I was just wondering how your daughter was doing now, a year later? Has it gotten any better or worse? Thank you so much.

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  29. I have just found all these comments, my daughter will be 10 in May and was diagnosed with Browns aged 2, she has not had any corrective surgery (Dr did not advise it, and has used my daughter as a case study for med students) and utilises the chin up head tilting position to correct her vision, the only problem I have had is ensuring that she is in the correct position in the classroom to see the board clearly, but is doing very well in school and is an excellent Ballerina. Does anybody notice that their childrens eye appears worse in the summer and they have issues with bright lights?

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    • Our daughter was diagnosed yesterday with Browns in her left eye at 19 months.We have always noticed that she really hates any form of light near her eyes but doctors just said that some people have a lower sensitivity to light than others.I wondered if your daughter suffers any discomfort with her eyes? as our daughter is too young to tell us.We are seeing another specialist next week so hopefully we may get a few answers.I thought you could find out about anything on the internet but in this case until I found this forum its been very hard

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  30. My grandaughter just had her 2 month check up after surgery yesterday. The doctor would like to see her back in 2 months. She is doing great. Very rarely does her eye go up in the wrong direction. He claims that her eye is slightly overcorrected (which is what he wanted). He would like to hold off on deciding whether or not she needs another surgery until that time. Once again we are very pleased with the results of the first surgery. We feel that it was in her best interest to correct the problem as much as possible.

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    • Lora, you have no idea how nice its been to follow the results of your granddaughter. My daughter is just about to start the process and I have been very concerned. I wish we could talk with more details. I don’t know anyone with this or anyone that knows of anyone that has dealt with this, so its been hard. I appreciate the information you have given us!

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  31. Lora, That is so great to hear. It sounds like that really was the answer for your granddaughter and I hope that you see continued improvement. Thank you so much for keeping us updated.

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  32. My Son is 6 years old and was diagnosed with Brown’s Syndrome in his right eye when he was 3. We see the pedi ophthalmologist every 6 months. His is developing binocular vision with slight far sightedness. Over the years he has had incidents of “freak out” where he starts screaming about his eye and how it hurts and is stuck. It takes several minutes for him to calm down and for him to be able to open his eye and use it as normal. The last time it happened was about 6 months ago and he handled it very well. He didn’t freak and just sat it out with his eyes closed and kept trying to open them until it was OK again. I see it a lot more now that he is older. Yeah, he can do the Scary Eye thing where the left eye rolls completely back in the socket and the right is looking straight at you! Gross! I think that he hides the discomfort from me more now because he knows that it might “mean” something big. He fights anyone who wants to shine a light in his eyes…annual checkup, the school nurse after he hit his head. He has a fit at the 6 month eye check ups. He does the chin lift, head tilt to see to the left. The Dr. says that he is borderline for surgery because he seems to compensate. BUT it obviously distresses him A LOT! I don’t even know if the kid can catch because he won’t do any overhead stuff. The basket ball hoop, baseball stuff just sits there! Well we have decided to go for the surgery this summer and I am scared but think it is the right thing to do. I want him to be able to catch a fly ball if he wants, to be able to look over his left shoulder when changing lanes while driving. Lora, it is great to read how well your granddaughter is doing!! Thank you for posting! It gives me heart!

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  33. Took my 2.75-year-old Alex (fraternal twin) to eye Dr at about age 1 because his right eye had light sensitivity, where he would always cover the left eye every time we went outside. They said “sometimes kids with light-colored eyes (has greenish-blue-ish) are more sensitive than others to light, he’s fine, bring him back @ age 3.” (My gut told me that the Dr didn’t know diddly squat.) I took him to a ‘Pediatric EyeDr’ (different guy) a month ago due to the sustaining, maybe worsened,light sensitivity, & poor guy was diagnosed w/ Brown’s. Said not bad enough for surgery, & I had noticed when he looked uwards and to the side, his eyes had a ‘crazy’ look about them, I just thought they were developing and would even out. Ped Dr doesn’t think light sensitivity has anything to do with B’s Syndrome, but I do!!! He also gave me a prescription for GLASSES, telling me my son is more farsighted in 1 eye than the other, and that the way he wrote the script was such that the ‘weaker’ eye would ‘strengthen,’ in hopes that he won’t always need glasses forever. Filled script. Nervous that he’ll break them… His twin wants glasses, too, of course. Lol. HAS ANYONE ELSE HAD AN ISSUE W/ LIGHT SENSITIVITY, OR HAD A Dr PRESCRIBE GLASSES? The eye with the light sensitivity is the one that goes up like it should, not the one that stays down when looking ‘up-&-to-the-side.’ … AnaRealtor at gmail dot com. Roanoke, VA

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    • If you read through some of the posts above, there are others who have mentioned sensitivity to light. My son also seems to have some sensitivity to light. I notice that he seems to squint a lot more when he walks out of his preschool into the sunlight than some of the other kids that are coming out at the same time, but he’s never complained about it. We just bought him some sunglasses to wear outside, but he rarely will wear them.

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    • My son also has a sensitivity to light. We were told that it wasn’t a part of Browns, but just try to get near him with a light for an eye exam! I would say his sensitivity is in the Brown’s eye. He will be fine sometimes and other times when it is really bright out he says it hurts. I had to buy him sunglasses the other day when we were out because he refused to open his eyes or go out of the building because it was too bright. Of course we had 3 other pairs in the car.
      Good luck with both your little ones!

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  35. My daughter is now 5 but was diagnosed with Brown syndrome when she was about 3 1/2 or 4. The first doctor said that he wouldn’t recommend surgery because too often another corrective procedure is necessary (as mentioned above). Of course if the head compensation is interfering with daily life, it’s probably worth a thought to go ahead with it. Then another Pedi Opth. first recommended no surgery because hers was a mild case (no head compensation) then a year later DID recommend surgery. There was no change in my daughter so this made me wonder what to believe. My gut instinct is to avoid surgery UNLESS it interferes significantly with her life. Tonight she complained of a burning pain in her eye, and that is the first time that has happened which worries me. She has had eye strain before but never these sharp pains. Perhaps it will be a passing thing.

    I was glad to find these posts because the condition is so rare that you feel like your kid is the only one! I have one cousin that had a lazy eye but other than that, no family history of eye problems though it is hereditary.

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  36. Oh, and my daughter was prescribed glasses since one of her eyes sees better than the other and that was thought to make the eye strain worse. As mentioned above, the doctor said that the glasses would help her eyes work together better. She has never complained of light sensitivity though.

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  37. For those of you that have Brown or have an older child with Brown syndrome, how bad is the eye strain and pain? I’m sure it varies from person to person but now that my daughter is complaining of burning pain, I’m wondering how much of a nuisance this usually is for people.

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    • My son is 6 and was diagnosed at about 3 or 3 1/2. At first they said probably no surgery, he was compensating with the head tilt. I told them that he seemed to react like it hurt him at times and was told that it was probably a weird feeling but not painful. Well once he could speak for himself he told them that it hurts sometimes (describes a burning feeling), he fights the eye exams because he says they hurt, and his eye gets “stuck” sometimes and he really freaks and cries because he says it hurts a lot. It happened just last week. And he still tells them about a time 1 1/2 years ago when his eye got stuck for a while, he really freaked out cried and said that it hurt A LOT. Now they say that the eyes are developing normally, vision is binocular with slight farsightedness so surgery is not medically necessary. But they do recommend surgery because he feels pain and gets very upset when anyone tries to do even a simple eye exam. I think the thing that sold me was the thought of looking over your shoulder to the left while changing lanes when driving. He couldn’t do that the way his eye is right now.
      He has never wanted to play catch, shoots once or twice at the basketball hoop, and is not even very interested in riding a bike. I wonder if this is due to double vision from his Browns or just not a Sports type. We are doing surgery in August. I guess we will see!
      Holly, listen to your daughter. Maybe now that her verbal skills are more developed she can better describe how it feels. You don’t have to decide right now. Watch her and listen to her. Maybe see how school goes. When the Doctor asked my son if we could fix his eye would he want us to. He said yes please and started to cry.

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      • Thanks for sharing…my daughter was diagnosed a year ago (sh is now 3). I had noticed a problem when she was 6 months since her eyes seemed to work differently than my 2 other kids…and it is clear that it progressing. Every day she tells me that her her eye is “stuck” or caught…often she will self correct by closing the eye and waiting. What I dont understand is the long term implications? We were told that surgery was too risky….what does it mean to live as a teen/adult w/ Browns?

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        • Hi…just to update you on my son’s progress. He is 5 now and our consultant has suggested he has an MRI scan to check the eye socket area and brain to ensure that it is Browns and not something else. His vision test declined and they were concerned the condition was getting worse. The consultant told us that Brown’s is not normally progressive but quite stable, so they want to rule out anything else! In answer to the previous contributor there are a number of posts from adults with Brown’s who talk about how they have adapted to the condition. This isn’t something my son has described though he does rub his eyes alot and sometimes covers one eye, I expect to equalise vision. Also Boston hospital in the US is doing a study into Browns and other similar conditions and possible genetic links. I can post details if interested.

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        • We too are looking at surgery number 3! We just moved to TX in June and saw his new eye dr the other day. His eye wanders often and she is so puzzled as to why it happened. She’s done a lot of these surgeries and has never had this happen. So we will return in a few months and talk about what’s next. She’s waiting for his surgical records. My guy is 13 going on 14 and this is starting to effect his reading ability.

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        • Hi everyone. My daughter had her surgery when she was 2 – it has been almost 2 years and she is doing great! We would highly recommend her doctor, Robert Petersen, at Boston Children’s Hospital. He is amazing and has a great deal of experience with Browns. Good luck to you all 🙂

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      • My son has been recommended for his third eye surgery to correct the Brown’s. I’m just wondering where you had your surgery done and who was the physician? I’m nervous about another surgery and want to find a physician that has experience with Brown’s surgeries.

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  38. Aw, gosh, Meg, I’m cryin my eyes out reading your story.That sweet lttle angel!!!

    And thank u Holly! Holly, did u say u thought glasses made his vision WORSE? Yikes.

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  39. Meg, your son’s story breaks my heart. I so wish he didn’t have to deal with this and I wish my son didn’t either. I take heart in stories like Margo’s above and Lora’s whose granddaughters surgery seems to have been a success. I pray that your son’t surgery goes as well and that he can find some relief.

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  40. Hi all,

    Just wanted to update. My son Brennen was diagnosed at 20 months with Brown Syndrome. He is now 24.5 months old and had his 2 yr check up today with the pediatrician. I have felt that his condition has worsened in the last few months and the pediatrician confirmed that today. He is tilting his head more severely and even holds his upper body slightly askew to compensate while walking. He has taken to walking along walls/fences with his head turned toward the wall/fence (not looking where he’s going) and runs into things rather frequently. The pediatrician seems to think this is him “playing” with his double vision. His eye got stuck in the “up” position for the first time (that I’ve seen) a few days ago. The pediatrician thinks the ophthalmologist will recommend surgery when we have our check up in July. I have mixed feelings, don’t want surgery for my baby but also don’t want him to be in pain or have discomfort.

    I will keep updating as we have appointments. It’s so hard to find anyone with any experience with this! I’m so thankful for you all sharing your experiences with everyone!!

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    • I just wanted to chime in again. My granddaughter Haley is doing wonderful. I believe her 2nd follow up appt is sometime next week. The surgery relieved many of the problems that Haley was having ie: running into things, falling down etc. It is very hard to place your child into the hands of anyone you don’t know let alone a doctor for surgery. If you think about it though, I believe we would all choose to do whatever we can to correct, or even help a little bit a situation like Browns Syndrome. We had 4 children who are now in their late twenties, not one of them had Browns but we had other challenges to face and I know that our decisions were based on what was best for the child at that particular time in their life. It is never easy to make a decision to have your child undergo surgery. If there is a chance that the surgery can improve or help even just a little I believe it is worth it!!

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  41. Hi there, just wanted to say that I will be 44 this month and have just been diagnosed with Brown Syndrome! I’ve had it since birth, my mother picked it up at 6 months. When I looked up at her my eyes would roll. Until yesterday I thought it was just normal strabismus but the Ophthalmologist confirmed it as quite significant Brown’s. The double vision can be annoying at times but until I was 24 I never even knew I had it. I just assumed everybody else was the same! Unconsciously I have just learned to make simple adaptations; the head tilt, lift the head up not the eyes or shut one eye. The depth perception thing is more annoying. I have difficulty putting washing on my washing line, am useless with bat and ball games, car parking’s a no no and sometimes even going up and down steps can be tricky if I have to look at them. I am particularly sensitive to light in my affected left eye so I tend to have my eyes half closed in sunlight and even a hint of a cool breeze will make it water like mad. As for pain yes I do get some. Mostly it’s just discomfort. My eyes get strained easily and often I feel I need to rest my eyes even though I’m not tired. Slightly worrying, more recently I have been getting some sharp stabbing pains that feels as though it’s actually deep with the eyeball.

    Occasionally people have noticed my eyes rolling and it has freaked out my mother, fellow school students and my ex. I’m sure other people have noticed as well but have been too polite to say anything. But all in all I have never found the Brown’s to have affected me in any significant way and never socially. I’ve actually grown quite fond of my weird eyes but maybe that’s just me! What has affected me socially though is that I have developed a retraction of my right eyelid in the last five years giving me a staring appearance. This does embarrass me deeply and I do avoid making eye contact with people, but I don’t know if this is related to the Brown’s or just co-incidental.

    One thing that I really would like to pass on though is please think long and hard before surgery. The Ophthalmologist told me that the surgery is tricky, the success rate is low and it can make double vision worse in that whereas it only occurs on looking up, the surgery can cause it to occur when looking straight ahead which is of course worse. She said she recently went to a meeting where a surgeon was talking about Brown’s surgery and happened to have a son with the condition. When asked if his son had had the surgery the answer was an emphatic ‘no’. Her belief is that surgery should only be considered if the condition was having a significant negative impact on an individual’s life. Please note that I’m in the UK. Things may be different elsewhere.

    I guess I really just wanted to say to the parents here that as an adult who’s had the condition since birth, it really hasn’t had any negative impact on my life. Sure it’s occasionally annoying, occasionally uncomfortable and I may have freaked a few people out at times but when you consider the really bad illnesses some children have to live with, it’s nothing. So if the doctor tells you not to worry please don’t. Best of luck to all x

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    • hi my little boy has browns he is 7 years old he also gets double vision when he looks down to much as a child did you ever find that, the ophthalmologist told me that she had not heard of that before the school have also picked it up and when he gets to the bottom of the page in his maths book he is doubling his answer.hope you dont mind me asking you. nicola

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      • Nicola, My daughter has browns (discovered around 18mo.) she is now 14 yrs and has had 4 surgeries… I see many people in post on here about the surgery being tricky and non-effective (UK vs US???) not sure if this is due to where they are receiving the treatment but can say that here in the US my daughter has greatly benefited from the surgeries. She has maintained 20/20 vision and has up until recently had no issues with the “wondering eyes”. The Dr has placed her in Bi-focal glasses to assist her in controling the eyes and seems to have assisted a great deal. She is also an elite travel softball player and the Browns has not hindered her in any way.. I do credit this to early detection and the surgeries… I would suggest that if your son is struggling in school and the double vision is that bothersome then it would be wise to seek out another Dr that is familar with Browns as the double vision is a classic for Browns. Your son and your family are in my prayers.

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        • Thank you Tanya i am in the uk and i think we may be well behind the us when it comes to browns I shall be looking more into this to get my little boy the best treatment i can. thank you for your reply i wish you and your daughter well

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        • Hi there,

          My girlie is 4.5 and she struggles when having to look up…double vision, headaches, etc. She too, is rather advanced in other areas, yet I worry! We are at Montessori school and all of the edu materials are at eye level or worked with on mats on the floor. I believe this has been imperative for her wellness. I will be going to a specialist in PA to learn if there are any more options…so far we have been told that surgery is too risky yet there are many on this site whom seem to have good outcomes. It would be FABULOUS to hear from more folks with little ones who have gone through the surgery to get a feel for how it went and how the precious beings are doing now…

          Thanks so much! If anyone wants to speak on the phone sometime…let me know!

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        • Hi Meghan,
          I understand how difficult it is when you have a doctor that does not want to treat for Browns. We ended up having to take our 2 year old to Boston, but found a terrific doctor. Emily had surgery in January and is doing fantastic! She has full range of motion in her eye and no double vision.

          Emily sees Dr. Robert Petersen at the Boston Children’s Hospital – we could not be happier with Dr. Petersen – he is truly amazing. Good luck to you and your family!

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        • Hi Erin , I just had a question about how you and your doctor determined that the benefits of surgery for your daughter outweighed the risks. I’m asking because my daughter was diagnosed with brown s last year and I have gotten two opinions from doctors saying they do not recommend surgery. But in hearing that your daughter s issue has been resolved , it makes me want to reconsider surgery as an option.

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        • Hi Jenny, according to our doctor, he felt that the biggest risk for Emily would be that she may have needed a second surgery, in the event that her eye was not back in the appropriate position or that the lower tendon starting overreacting and pushing her eye in the opposite direction, but that a second surgery was the biggest risk for her. Emily had a very severe case of Browns and her doctor was confident that she should have the surgery.

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        • HI!! May I ask where you are and whom your doc is?? In DE I am not having the best support…..

          Thank you so much…I am so glad to hear your daughter is doing well!!!

          Blessings to you and your family

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        • Dear Tanya, I ‘m Frosso , I come from Greece and my 7 years old daughter has Brown in her right eye. Could you please give me the name and the email adress of your doctor? Thanks a lot. Wish you all my best.

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        • Well my 13 yr old son just this last yr had 2 surgeries for his Browns and sadly it really hasn’t helped. He had a myectomy and a tenectomy and his eye still wanders. It’s almost a completely different problem. He can usually shake it back to his control. We moved recently to TX and have the name of a new ped opthamologist that I will def be calling as soon as our insurance comes through. He gets upset with me for having the surgery and I almost regret it. His head tilt is better that’s for sure but now he sees double more often than not which I can only imagine is very bothersome for him. Sad…

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        • HELLO TANYA, EVEN THOUGH I DO NOT WANT THE SURGERY NOW (MELISA IS 7) I WILL KEEP CHECKING UP HER CONDITION AND WOULD LIKE TO KNOW WHO IS YOUR DOCTOR. THE ONE THAT PERFORMED THE SURGERY I HAVE LOOKED EVERY WHERE. I TAKE MY DAUGHTER TO HOUSTON, TX BUT WOULD LIKE TO HERA MORE OPINIONS. THANKS
          ROCIO

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  42. My daughter has brown syndrome since she was a baby.She also has exotropia(wall eyes)and her eyes are in good health.She is 4 yrs old now and her opthamologist suggested to get 2 surgeries done.One for exotropia and the other for brown syndrome.I live in florida and Iam looking for someone who has already done this surgery.Iam not sure if I should proceed with the surgery although my previous opthomologist said if her exotropia worsens then Surgery is the best option.If someone has already had the surgery please share your experiences. if you know any good eye surgeons in florida please share the information.Thanks

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    • I’m in FL as well. We haven’t had to do any surgeries yet, we will know more on that this summer. We don’t have any pediatric specialists where I live so we have been going to Nemours in Jacksonville. The Ophthalmology department there is outstanding. Again, I haven’t had to deal with them as far as surgeries go but they’ve been great with everything else.

      Sorry I couldn’t be more help!

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      • Thank you Beth.My opthamologist is Dr.Guggino at tampa.He seems to be good.My pediatrician highly recommends him.Still my daughter is not big enough to explain what she sees and feels so Iam yet to decide on surgery

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  43. mom2agirl, My son had surgery to correct exotropia at 9 months. The PO at that time did not recommend surgery for Brown’s. That PO has since retired and the new PO seems more concerned with the Browns than the exotropia, which surgery only fixed 25%. His 2nd surgery at 18 months was supposed to correct the exotropia and the Browns. This time the exotropia is better (not perfect) and the browns seems more noticeable to me, especially when he looks in. Also, the eyelid seems a little droopy. My recommendation to you is to get a 2nd, 3rd and even 4th opinion before deciding what to do and then go with your gut feeling on what is best for your little girl. I am not in FL so I am unable to help you out with a finding a good PO.

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  44. My daughter was disagnosed with Browns Syndrome at 2 1/2. This i believe was the result of a very traumatic birth resulting in an emergency ceaser. We did not choose surgery and she has not suffered along the way staying with the top kids in the class academically. The only difficulty now is in high school her eye becomes tired and wonders occasionally. She is training to become a professional ballerina and only recently she has said she sees double during pirrouettes and spots in her vision with bright lights. I was advised only to look at surgery should it become a social stigma for her. I am now considering surgery as it may hinder her ability in attaining her goal of becoming a professional ballerina. All in all she has a happy healthy and bright future ahead. The stats for success on surgery for this i believe is only around 80% which isnt really high enough for me. Hope for those of you out there considering this, I would recommend waiting until after the age of 8-10 years. Like Chrissy’s 23yr old daughter, she suffers with occasional headaches from her workload. Finding ways to reduce the demands on the eye seems like the best solution in the meantime. Travel sickness has decreased with age.Best of luck to everyone. Sometimes it is just some extra help with homework, patience and understanding around them and they will succeed and become confident young adults like my daughter. KERRY.

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  45. I was diagnosed with browns syndrom when I was 12 months old, they reccomended surgery and at that time they could not gaurantee my vision would be as good when they were finished, so I opted out. I am now 20 years old and was never made fun of for it. The only time you can see it is when I look up without lifting my head. I get headaches periodically from looking up to much but thats about it. my vision is perfect and no one knows I have it unless I show them.. So I don’t want any of the parents above to think they need to fix it by surgery get a few opinions they may be ok..

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    • Can you play sports?? My daughter has the same type of case as you. She is 3…..Will she be able to c Please help. -Clintacth a fly ball, shoot baskets, or play volleyball???

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      • Hi Clint, if it’s any help I’m an adult who’s had Brown Syndrome since birth. I have always been able to play sports; tennis, netball, rounders etc but my depth perception is affected by the Brown’s so I was never brilliant at them. I never made the school team or anything like that but neither did the majority who don’t have Browns! It certainly never stopped me from taking part and it’s unlikely to stop your daughter either. Please don’t worry, she’ll probably be just fine.

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  46. Hi everyone. Just wanted to keep you all updated on Brennen. He was diagnosed with Brown’s Syndrome at 20 months old. We went back for a check up in July (at 26 months old) and the Dr. said she wasn’t convinced it was Brown’s. We had another check up yesterday after having spent the last 4 weeks taking as many pictures and videos as possible of his eyes. The Dr’s decided that he has Duane’s Syndrome, not Brown’s. We have decided to wait and see how he develops and if he’s effected by his eyes at all before we think about surgery.

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    • Hi Beth – I don’t know if you’re still on this board or not, but wanted to ask about Brennen’s well being now that it’s been a few years. Did the Duane’s Syndrome diagnosis turn out to be true? Regardless of the outcome, I hope you & Brennan are well.

      Best regards,
      Margo

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  47. We just found out today,after a second opinion, our 4yr old daughter has Brown’s Syndrome… It happened so fast and we are already scheduled for surgery this month! The Doctor never mentioned her growing out of it or even steroids…
    it is only noticeable when she looks up but she does have a droopy eyelid and one eye is larger than the other.. she also complains about pain in her right eye. Another thing.. he will be performing surgery on both eyes, something about realigning them. Our heads are just spinning right now! We’ve never even heard of this before!

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    • Priscilla,

      Just from everything I’ve read in trying to find answers about my own son’s diagnosis, there doesn’t seem to be any reason to rush into surgery. I would recommend that you get a second opinion about the surgery or put it off until your head stops spinning and you are comfortable with that decision.

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    • Hi Priscilla, I would be inclined to ask the surgeon what he means by realinging the eyes as it sounds possible that your daughter might have what I have. My left (Brown Syndrome) eyelid was droopy, this sometimes happens with Brown Syndrome and when you have a droopy eyelid, you sometimes get compensatory retraction of the other eyelid. It makes one eye ‘look’ larger than the other, but it’s not. It’s just that one eyelid is droopy and the other is pulled up tightly giving a misaligned ‘appearance’. I had the droopy eyelid fixed in August (blepharoplasty) and I’m booked to have a Botox injection into the retracted lid this month to allow the lid to drop into a normal position. This will be tried first as an alternative to surgery.

      You might find that if this is the case for your daughter, her eyes may be perfectly OK but it might just be her eyelids that the surgeon is going to fix so that her eyes will look more normal. It may well be, like mine, being done for purely cosmetic reasons. I would ask. Good luck.

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      • Cheryl Grimes, thanks for the very useful information. I really began to notice the droopy eye on my son after he had surgery and wasnt sure if it was related to the surgery itself or to the Browns. Did you have surgery for your Brown Syndrome? Did the blepharoplasty help? Darlene

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      • Hi Darlene, my droopy eyelid was related to the Brown Syndrome and the other eyelid began retracting when it started overcompensating for the droopy eyelid. It got worse over a period of 5-10 years to the point where my surgeon agreed that my eyes did ‘look’ significantly misaligned. The right (retracted lid) eye ‘looks’ like it has dropped down in the eye socket and ‘appears’ much smaller than the left eye but it is perfectly normal and it’s just the lid making it look like that. The blepharoplasty certainly helped, firstly by removing the droop my eyes ‘appeared’ less misaligned and I was surprised that my peripheral vision was better. I hadn’t realised the effect the droop was having. It wasn’t a massive improvement but it was noticable. Hopefully the Botox injection will weaken the muscle of the retracted eyelid and my eyes should then look normal. I’ve never had surgery for the Brown Syndrome. It was considered when I was about 12 but for some reason never happened. The Ophthalmologist tells me surgery would be too risky and to be honest as I’ve had Brown’s all my life I’m happy not to bother with it.

        It does sound strange if you’ve only noticed a droop in your son’s eye following surgery. It might be that because of the surgery you’re subconciously taking more notice of his eyes or perhaps it has been caused by the surgery. It’s probably worth getting it checked, even if just to put your own mind at rest. I hope he makes a great recovery.

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  48. My 1 year old has just had the operation yesterday for Browns Syndrome, we noticed from birth and was dealt with very quick though she couldnt hav the operation til she was 1. She was 1 on Tuesday followed by the op on Friday. The eye tendon was fine then had attached itself somewhere it shouldnt of restrcting hr use of looking up. She would always tilt her head in a postition that was comfortable for her to look up. The problem of this is that medically she can get problems with her neck alternativeley they can give up using there eye as the hassle of having to put their head in an awkward position, thats why I opted for surgery as soon as possible. Her eye can now freely look up down side to side et. Her eye is swollen at the minute but she is doing well at the minute it looks worse thought the consltant reassured us that the operation was sucessful she can now move her eye it a case of learning how to use it again plus there is a chance further surgery will be required but this will be merely for cosmetic reasons I am 100% happy she had the operation will update on her progress

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    • Joanne, my son had surgery for Brown’s about 10 months ago and it didnt really fix anything. The PO wants to do what he calls a more aggressive surgery now but has informed us of the additional risks and the likeliness of additional surgeries to fix the problems from the more aggressive surgery. I’m happy to hear the surgery worked for your little one but I am curious as to what the PO did exactly. Also, does your daughters eye droop? Darlene

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  49. Hello all! any one who has been following Lora Callihan’s posts has been reading about my daughter Haley. i have been meaning to log in since her surgery last year and am just now getting a chance to do so. It is hard to read about all these children with brown syndrome. my heart goes out to all of you.
    Haley turned 2 in august. she is doing wonderful since her surgery. we only have to take her to the eye doctor once a year for a check up now (much better than every 2 months). i am soooo glad i decided to go ahead with the surgery. its a tough decision to put your baby through something like that but the doctor reassured me that it was a very simple, quick and low risk surgery. he was 100% right. the surgery took 15-20 mins. recovery a half hour. about an hour after we left the hospital haley was eating a cheeseburger and playing with her toys. she never seemed to be in any pain (the doctor said she wouldnt be). she went from carrying her nose in the air to carrying her head to the left and i was worried. i took her for her check up and he said she was just adjusting to her new found function of her eye. he was right. she was able to move her eye all directions for the first time so in a way she had to teach herself how to see again. it didnt take long!
    to look at her now you wouldnt know she had brown syndrome or ever had eye surgery. she runs, climbs, swims, plays, and is a happy healthy two year old. the surgery was the best thing we could have done for her. if anyone wants information on the clinic or doctor we used let me know. he was wonderful!!

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    • I would like too know which clinic you used and how your daughter is doing now. Thank you for your feedback! This gives us hope!

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  50. Reading all of these post make me feel alot better. At our daughters 6M check up we noticed something was wrong with her eye. The peditrician referred us to a ped eye specialist. He immediately diagnosed our daughter with Brown’s syndrom. He said it was so bad that she was starting to shut down using her vision. We had to do the patch every day for 2 hrs a day and went back for a checkup 2M later. He then scheduled surgery for a month out from that visit. A week before the surgery we noticed her good eye was looking funny and thought maybe she had something wrong with it, but dr assured us that eye was functioning properly. We had the surgery which as mentioned above was quick and painless. She went in for her 2 wk follow up and the dr told us she has brown’s syndrome in her other eye. When I told him how we asked him about that before the 1st surgery he said that the eye he operated on was soooo bad that it made the other eye look like it was functioning. My daughter’s first surgery was at 9M now we are having another one for the other eye in 1 month (she will be 15M). I am hoping all will be fine after this last surgery. Right now her eye that was operated on goes way into her head when she uses the bad eye to focus. He said once we have this surgery it will correct this. I’m just concerned her eyes might never be right.

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  52. Hi everyone this has been really interesting reading. My little girl was diagnosed with left Browns when she was 3/4 years old. I had not noticed anything at all when she was a baby in respect of her eyes. She started complaining of a sore eye and told me that she could see two mummys so I got her checked out. We are in the UK and we were told that surgery is not successful at all. In fact the doctor said as she gets taller she will not need to look up so much and it will be less of a problem!!!!! However at the same time she also started problems with her health and was getting recurrent fevers. She has since been diagnosed with periodic fever syndrome. We have been told that Left Browns can be genetic or acquired and there can be a link with Arthritis/Inflammation. The inflammation can cause the Left Browns. She has now been diagnosed with an Autoinflammatory disorder and we are waiting for confirmation if the two are related. As I said before I did not notice it from birth but rather several years later. Other people do notice it, in fact once during an emergency review at the hospital the Dr thought she was having a seizure because she had never seen the disorder before! I have noticed that it is less of a bother now she is taller (age 7) and she does not bump into things so much. She does however have to still take care on stairs and she still trips sometimes. I dont think personally that I would consider surgery but that is because of all the other problems that she has. It is interesting to read of other people’s views particularly as in the UK surgery is not even discussed let alone offered.

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    • Hi Rebecca, this is interesting being a UK adult with Brown Syndrome in my left eye although mine was present from birth and touch wood I haven’t suffered with any arthritis or inflammation. I didn’t know there was a possible link. You’re right in the UK, from my own experience and from what I’ve read here, surgery is considered generally to be unsuccessful and more likely to make your vision worse rather than better. It sounds like your daughter may have acquired it later rather than having been born with it. I never complained of double vision even though I have it of course, because I honestly assumed that everyone’s vision was like that as I’d never known anything different. It was only at a routine eye exam when I was 23 that I was told that it wasn’t ‘normal’. Like your daughter I still need to be careful on stairs and steps and even now I still occasionally bump into things due to the inaccurate depth perception but that’s invariably when I’m being a bit hasty. If I take things a bit more carefully there’s no problem. Personally I have never found Brown Syndrome to be a major issue for me and to be honest if the NHS turned round to me now and said they’d do the surgery if I wanted, I’d turn the offer down.

      Is there any chance though that if your daughter’s Browns and autoinflammatory disorder are related, treating the autoinflammatory disorder might fix the Browns? Hope it all works out well for her.

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    • Do you know if there are any UK based sites for Browns, as it seems to be treated differently over here?! My son was diagnosed when he was about 3, then was sent away and told to come back in a year, We have now moved so going through the process again, not once has surgery been mentioned!

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  53. Hello, glad to find this post. My 5 year old daughter was diagnosed with Browns in both eyes at 3. We had noticed that she couldnt look up at all without lifting her head or left or right too far without going cross eyed. She can only turn her eyes 50% to either side before going crosseyed which upsets her and it hurts. She has adapted well and we almost forgot about it until we got a flat screen TV as she can only watch it from directly in front (she didn’t seem to have a problem with the old box curved screen variety) as she says she can see two of everything and gets quite upset. I have started to watch her more closely and notice that she will disengage once her vision starts to blur and now realise why she always wants to sit on my knee when I read to her.
    I am concerned how this is going to affect her schooling. My opthamologist has advised me to inform her teachers throughout her life about her eyes so that she can be seated in the best position for her in the class, take regular breaks to give her eyes a rest and hopefully stay focused.
    We have been advised that we should wait as long as possible before contemplating surgery and that hopefully as she grows her condition will be less obvious and that she will learn to make the necessary adjustements and she won’t need surgery at all, however, as her mum, I am concerned about her being teased or being the kid in the school photo with the wonky eyes. Time will tell and we will take our cues from her. I am reassured that in telling my friends about her condition most of them have never noticed.
    Marg

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  54. Hello, our son Liam was diagnosed to have the Brown’s syndrome, however with a ? mark beside. Would be interested to talk to someone with similar problems. His eye disorder seems to influence his body muscle development, leaving him quite “atonic” most of the time. Would be interested in seeing some pictures also, to try to understand why the ? mark still stands in our diagnose. Thanks

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  55. My daughter was dianosed with Browns syndrome when she was 9 months old, I noticed it when she was looking up at me from her car seat and I thought, Wow she can make her right eye look off to the side while looking straight at me with the other! I took her to a Texas childrens Eye Specialist whom decided to watch her over the years. They kept a close watch on her and considered surgery but felt it would get better with time.
    She is now 12 and it is bearly ever noticable, in fact my daughter has been in several TV commercials and they have never known she has brown syndrome. The side to side problem is gone the only time we ever notice it is when she looks up without raising her head, and even then there is not much difference, you have to really be looking for it…. Hope this helps some of you in the same shoes. Also, I did alot of praying, I highly suggest it, It worked for us 🙂

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  56. I am 40 years old and have Brown’s Syndrome. It was not diagnosed until I was in my 20s and I’ve never been treated for it. Over time it seems to have improved somewhat and is not as noticable. Even when I was younger, I don’t think anyone noticed it unless I deliberately tried to scare people by making my eyes go up (one would go to the side). I am surprised to read that surgery is recommended since I got all the way to 40 without the lack of eye movement ever causing a problem for me. Unless it is something that strangers will react to on a daily basis because the eye’s movement is so obviously inhibited, I would skip the surgery.

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  57. My son was diagnosed with Brown’s affecting his left eye when he was 9 months. He is now 6 and his condition has remained the same, it is only noticable when looking up to the right. I do notice his eye drift when he is tired, which has become less often as he has got older. Thanks for sharing your personal experiences I’m glad to hear that he is not alone 🙂

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  58. Hi all I have just found you all. I am an English woman who is 34. I was diagnosed with Browns syndrome at the age of 11, but have always worn glasses and had double vision all of my life. I had surgeries as a teenager and young adult as I have it bilaterally and it is not just on looking up but just off centre, I also have it on looking down to a certain degree. The surgeries took place in the UK by top surgeons but were unsuccessful. It is very common for children who do not have surgery to out grow the problem as they hit puberty and the muscal tone alters in the body. I currently wear eye glasses with prism lenses as they help the brain re focus as my double vision is also bilateral and on the hunt for anyone who can offer any advice and support.

    As a child I used to adjust my posture to compensate and had depth perception issues. The problem with head adjustment is it causes a very sore neck eventually. I suffered from ‘locking’ which is also painful and scary and when it ‘unlocks’ it also causes a pain behind the eye. I also favoured my right eye as my left was harder to control so wore an opaque contact lens for some years to block out the left, and also wore an eye patch for a while.

    I hope all of you with children are given teh right care and support and don’t quickly jump into surgery as it does sometime correct itself.

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  59. My grandson was diagnosed with Brown syndrome at around15 months. He has a head tilt since birth and was seen at Bascolm Palmer by a pediatric specialist in this. He didn’t recomend surgery…it will not cure it , might make it a little better…or not. He said if he looses his head tilt which is a way of compensating that could be a bad sign…meaning the brain can turn off the use of his bad eye. This is why it must be followed up closely. It can on rare occasions correct itself..and then the head tilt would be gone..so this could be good. Interestingly enough he was cleared of occular torticolis by an opthamologist. Not until we saw a specialist did we get answers..to why he tilts his head.

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  60. DO ANY OTHER BROWN SYNDROME KIDS HAVE LIMITED EYE CONTACT ISSUES?
    My son was diagnosed with Brown Syndrome at 3. He is now 4 and over the last year we’re begun to notice that he doesn’t make the amount of eye contact that is normal for a three year old. We took him to a developmental pediatrician, who didn’t observe any reason to test him for autism or asperger’s. but that Pediatrician got down on the mat with my son. His teachers observed the eye contact issue. I brought up his eye contact issue with our normal pediatrician, but she never connected it to his diagnosed Brown’s Syndrome until i raised the issue with her. I am wondering whether other kids with Brown Syndrome are as difficult to make eye contact with as much son. Seeing other mommies try to catch my son’s eye or other kids take in the fact that my son won’t look them in the face breaks my heart. Anyone else with Brown Syndrome kids that exhibit social difficulties at a young age?

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    • Eve, My son was diagnosed with Brown Syndrom at 3 as well. He will be 5 in a couple of weeks. I have not noticed any eye contact issues, but then his Brown’s is typically not even noticeable unless he moves his head in a certain direction (chin down, eyes tilted upward). I wonder if the position of your son’s eye makes it difficult for him to focus on people or objects that are close to him, or perhaps there is something unrelated to Brown’s going on. I am sorry that you are having to deal with this. My heart goes out to you. I hope you find a doctor than can get to the bottom of it soon.

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    • Does your son look at the persons face but not directly in the eye? Maybe he is having double vision or only using one eye?? When my son does not have his patch on he only makes eye contact with his non Browns syndrome eye. Hope this helps.

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  61. Hi guys,

    I am 24 years old and I live in Sydney, Australia. I was diagnosed with Brown’s Syndrome 22 years ago after my mum noticed that my left eye would not move when I moved my right eye . It was said that I was one of the very few documented cases in Australia at the time (don’t know how true that is). Anyway, all the doctors wanted to undertake surgery – partly for research purposes – but my parents would not let them at the behest of one of the opthalmologists we encountered along the way. Instead, she gave me glasses and developed a training program for my eye muscles. By the age of 8 it was totally cured. Today, I have 20-20 vision and no other problems (knock on wood). Now, I do not know if this is the result of the treatment or if I just grew out of it, but even the opthalmologist was amazed! I do know that it can be a trying time for parents but make sure that YOU make the final choice for YOUR own child. Even if you’re not as lucky as my parents and I, just remember that your children can go on to do great things with the right love and support even despite this unfortunate disease.

    Good luck and all the best.

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    • I wanted to thank you for your post a long time ago and am just getting around to it. It is great to hear success stories. It really is important to find the right doctor and I have no doubt that the program she developed is what helped you.

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    • Hi Marc, thanks for sharing. My son has Browns and I’m based in Sydney as well. Could I please have the details of your treating doctor? Thanks in advance.

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  62. Hello everybody I am writing from Hermosillo Mexico, my 2.5 age daughter was diagnosed with Brown syndrome this morning and I am trying to get information bout it because I never heard something of this syndrome before.

    Out doctor said that this syndrome is something that my daughter has to live with, but I am not plenty sure of that so that’s why I am trying to research as much as I can.
    Thanks everybody for the comment and this forum it really helps to people like me and my wife that we are just beginning in this

    Saludos a todos

    Marcos G.

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    • HOLA MARCOS. APENAS ENCONTRE ESTA PAGINA DESPUES DE TANTO BUSCAR RESPUESTAS. HOW IS YOUR DAUGHTER DOING?? MINE IS 8 NOW. NOBODY IN MEXICO SEEMS TO KNOW ABOUT THIS SYNDROME. I HAD TO GO TO THE US TO FOUND OUT WHAT THE PROBLE WAS, AND WAS ALSO TOLD NOT TO HAVE SURGERY BUT I STILL WONDER IF IT IS THE RIGHT THING TO DO OR NOT. YOU WILL HAVE TO KEEP ON DOING RESEARCH SINCE THERE IS NOTHING FINAL RESOLUTION. I WANT TO WAIT TO SEE MORE EFFECTIVE RESULTS WITH SURGERY (TOO MANY ARTICLES WITH NO TOO GOOD RESULTS) AND MORE PLACES LIKE THIS WHERE I CAN GET AN EXPERIENCED DR´S NAME TO VISIT.
      ROCIO

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  63. my son had 2 surgeries@ 3.5& 5.5 and both seemed 100% for about a year and then other things like more double vision, he starting to talk about what he feels and what he sees more, didnt need glasses after 1st surgery but the end of the next year his vision changed to needing glasses again and still do at 9yo, was told by the Dr may need up to 3 surgeries ( that wasn’t unusual)in the beginning-but worried about wether to do the 3rd also live in Florida an Ped-/surg left the town.

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  64. I came across this thread whilst doing some research on Brown Syndrome, as I was born with it myself. I was diagnosed with Brown Syndrome (BS is what I will refer to it from now on) in the left eye, which is apparently more unusual than the right but I can not confirm this as definite.

    I thought it would be worth while posting on this some of my first-hand experience, hopefully it can help those with young children that have been recently diagnosed. My BS was very prominent from birth, with a video of my eye movements being made when I was three months old, as I was one of the first babies to be diagnosed with the condition where I am from – apparently. However I’ve never had any real difficulty in my vision. When I was younger, my eyes would get tired easily enough and I also had the common “Lock” feeling when I focused on anything for extensive periods of time. The Doctors had suggested when I was around 7 years of age to have surgery to improve the movement, however with the possibility of multiple operations and the chances of things going wrong in my case where about 50:50 if not slightly more tilted in going badly, so surgery was not considered. With the use of patches over my right eye (the unaffected eye) for several months/years (I can not recall the definite amount without getting in contact with my Ophthalmist/Optometrist – however I remember it being over a lengthy period of time) the strength in my affected eye was greatly improved and bar looking upwards was hardly noticeable, especially in comparison to what it was before. I had an operation on my right eye, not the eye with BS, when I was 14/15 years of age, as a result of the discomfort of the eyes not working together and the extra strain that was added to it as a result of the BS in the left eye. As I was older when I got this operation, it did not try to correct the BS, which from experience and research does not seem curable, but merely relieve the strain in the muscles around the eye that had to do extra work (in my case my right eye). Before the operation I had not had bilateral vision, however now, five years on, I do not quite have far bilateral vision, but I do have near bilateral vision.

    My operation had only been considered when it became very uncomfortable and slightly painful to have the eyes not working together, so from my own experience I would advise that jumping to surgery when BS is first diagnosed is not always the best answer, because the condition can improve as the child grows up and also through the use of non-evasive treatment (like patches etc) and especially if the child can function and work with the eyes as they are. I’m 19, nearly 20, and I do not regret putting off surgery until I was older and able to understand and partly make the decision myself, instead of having it decided for me. Also the treatment of Brown Syndrome appears to be improving as time goes on, so you may find, like I did, that the chances of a successful surgery increases the longer you wait.

    As a vote of encouragement, nobody I’ve met since my treatment can notice any problems with my eyes, even some don’t notice it when I look upwards.

    Hopefully this is of some use to you all.

    Jelly

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  65. Hello. My 2 year old daughter was diagnosed 3 weeks ago with acquired Browns Syndrome. She had an MRI which showed completely normal, and she had completely normal blood work results for tests ordered by a pediatric rheumatologist to rule out any underlying autoimmune problems. The pediatric opthamologist we are seeing has suggested that we just sit back and wait to see if our daughter’s condition improves. Our Dr. has only seen 2 other cases of aquired brown’s and said that they “spontaneously” went away in approximately 2 -3 years, but did add that our daughter’s is the most severe she has seen. I just don’t understand this. How can something like this happen literally over night, and then have a best case scenario of “spontaneously” going away in a few years?? We are seeking a second opinion and hope that this next dr. will offer some advice on treatment. Has anyone with acquired, non-trauma related Brown’s had any luck with steroid treatment?
    Thanks.
    Erin

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  66. My daughter (5 1/2) was diagnosed with Browns syndrome 3 weeks ago. Today she told me she sees magical lights in her eye. When I asked her what she meant. She said it looks like zig zag lines, the color of a rainbow. She also said her eye hurt. This is the second time this has happened. The first time was before she was diagnosed and it happened through the night. I thought she was dreaming. Has anyone else had an experience like this? I know there can be eye pain but I don’t know about lights??

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    • My daughter is only 2, so I’m not sure about the lights, but I know that she feels the most pain from this at night. Has your doctor discussed any type of treatment?

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      • The doctor that diagnosed her said it may go away on its own. They will see her again in 3 and 6 months. It is not a severe case. Mostly noticable when she looked right at you and upwards. Our optometrist thinks the lights may be ocular migraines. Its really hard to tell in a 5 year old.

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    • Hi Lisa,

      I’ve had Brown Syndrome pretty much forever. I do see lights pretty much all the time, but honestly at this point it doesn’t bother me any longer. There has been eye pain at times for me, but mostly when I’m really tired and/or stressed and it always is a sharp pain that lasts for no more than a couple of minutes.

      One thing to consider is that at least for me, the lights/pain are worse when I’ve spent a lot of time looking at any type of screen -TV, computer etc. (This makes writing term papers even more fun!) Not sure if that’s just me though.

      Hope your daughter is doing well!

      -Vivi

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  67. My daughter was diagnosed with brown s syndrome at 2 and a half years old. I began noticing her one eye staying straight as the other eye looked up in February. This began a week or two after she had a surgery to remove her adenoids . The adenoids are located close to the superior oblique tendon , I feel there is some connection. Has anyone else experienced a similar connection?

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    • Hi….my son was diagnosed with bilateral brown’s syndrome at 4 years old and although we had observed problems since he was a baby, nonetheless it was a shock. It is so good to find this forum and hear experiences of parents and people with Brown’s from around the world.
      My son definately has light sensitivity in bright light and has a distinct head tilt. Lately and mostly when watching TV he has been pulling at his eyes, frowning, looking down then up, covering one eye and
      moving his head to different angles as he watches TV. He doesn’t complain but its so marked and he’s moving his head alot. We are concerned as he started school in sept, so will get it checked at Feb eye app. I wanted to ask if anyone knows eye exercises that can help as mentioned before? Also my son can’t seem to describe eye symptoms just now and concerned he has pain or this ‘locking’ of the eye. How could we find out?
      Thank you for this wonderful forum & all the information & sharing about this condition. I do hope all the kids with Brown’s have some progress. For my son i just want to know ive looked into every option & not just accepted the ‘wait & see’ approach yet. While its good to hear people cope very well with Brown’s, the thought of him dealing with headaches, eye strain, problems with depth perception, driving etc fills me with concern for his future. Perhaps it will improve with time but in meantime want to find out more ab options, risks & success rates for surgery, even if just in US. Any recommendations of specialists greatly received… Bless you and all our children with special eyes xxx

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      • Karen,
        This may or may not be overly helpful, but please let me reassure you that while I have Browns, it’s not that big a deal and doesn’t affect me very much. Yes, I see lights all the time, but to me that’s normal. There is eye pain at times, but it’s short lasting and occurs very sporadically. I do have poor depth perception, but honestly I have learned to compensate.

        I know it’s concerning to think about eye pain, strain, depth perception etc, but the reality is that I, and if you read other comments from other adults on this thread, you adapt to it and it becomes not that big a deal. (Cheryl has left some great comments.)

        Hope your son does well! And if you have any questions about what it’s like to have Brown Syndrome, feel free to ask.

        -Vivi

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      • Hi,
        Our son was diagnosed with Browns when he was two years old after we noticed a glide in one eye. He was seen every three months, we were told there was little to worry about. Then we were told he needed glasses which was a shock as previous visits had not indicated this.
        Once we had glasses we were advised to patch one eye and he responded well, after a year we were told he no longer needed it. Another year has gone by and we are now told we need to start patching again and are being strongly advised to go for surgery by a new consultant.

        We found this out yesterday after further tests. Having witnessed the tests ourselves its very clear our son has an acute problem with double vision occurring in all but a small field of vision “straight on” and fairly average 3D capability.

        In addition, the consultant wants to use a fairly new kind of surgery which she tells us is 6 or 7 years old. this involves using a “stitch” method on the eye tendon that can be altered in theatre to ensure there is no over compensation of the eye movement post op. The surgeon has used this method we are told 3 times before all with positive results.
        Has anyone heard of this version of surgery or knows someone who has had it done?
        Any advice offered would be greatly appreciated.

        His case is being referred for a second opinion to a nearby Eye Hospital, so we are now waiting for a letter from them advising further.
        If surgery were to go ahead, he would need to have this under specialist care as he has a VSD or heart murmur.
        So as you can imagine we are extremley concerned about surgery.

        We are really still in shock as we have had so many different opinions over the years and have no idea what to do next.

        Karen you mentioned a study written by Boston Hospital in a more recent post, If you could post this I would be grateful.

        I should say we live in the UK, as such our National Health Service is our provider of health care. Whilst the care we have been provided has been adequate as far as I can tell, we have had little continuity so far due to home relocation etc and the number of differing opinions we have encountered frustrating to say the least.

        Chris.

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        • Hi all

          Chris – your experience with your child sounds quite different with glasses and patching. I wonder if my son will need glasses as his last sight test results were lower. I haven’t heard of the operation but be interested to hear any details. I do hope it works out for your son. I am aware of the tendon expander operation.
          The study is based at Boston children’s hospital and called ‘ genetic studies of strabismus, congenital cranial dysinnervation disorders (CCDDs)’ and run by Elizabeth Engel MD. If you look on the website it should come up. We are signing our son up to it as worth getting expert advice! Hope this helps

          Karen

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  68. hello everyone, cant beleive how many actually are diagnosed with browns syndrome. my daughter Haley was diagnosed in 09′ and feb of 10′ she had the surgery on her eye. now she is 3 and a half and doing great!!!! i am so glad we made the decision to do the surgery. she carries her head straight (which her carrying it crooked was the first sign of me knowing something was wrong) she doesnt complain of any headaches or dizziness which ive read some have issues with. every once and a while if she is really tired i will see her right eye (the one that had the surgery) stray up farther than the left. but, that she wasnt able to move it up at all b4 the surgery and is able to move it freely now i feel content with my decision. about the surgery : it was a very simple out patient surgery. it was fast and caused her no pain or discomfort. by the time we got home that night she was fine. it took a few weeks and she adjusted to the new found movement in her eye. basicly they went in the bottom of her eye and snipped the tendon(s) that r there. the tendons were what was restricting her eye movement. they grew back together on their and that extra growth is what gave her tendons the length they needed to allow her eye to move up. as i said the only thing now is the occasional over-extension upward. i am not a doctor, i am a mother, so this description is my understanding of the process that took place. i hope this is able to help some of you with your research and decisions. good luck all

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  69. Wow! Thanks so much for your post about your daughter. So amazing to hear about a successful operation for a Brown’s patient and such a good outcome. It gives me hope…

    Virginia – can I ask where you are from? We are based in the UK and from what I gather the doctors seem reluctant to operate. Yet I am questoning this and want to know more. Any details about where your daughter had surgery would be helpful too, if your happy to share them?

    I would like to speak to specialists, even in other countries about the possibility of surgical procedures and it was great to read your description as a mother of the operation and its results for Haley. It is interesting to hear other peoples experience of Browns (thanks Vivi for the reassurance) and how they deal with it. Nevertheless, at the moment I can’t accept that eye strain, pain, head tilt, poor depth perception is what my son has to face. These days people use computers so much and so problems like eye strain are going to be more likely. Who knows how it will affect him with studying etc?

    Look forward to hearing from you
    Karen

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    • Hi Karen. My 2 year old daughter was diagnosed 3 months ago with acquired Brown’s Syndrome. Last week she had surgery at Boston Children’s Hospital and she is doing great!Without knowing her, you would have no idea that she had any problem with her eye at all. Yesterday was our post-op check up and our doctor was very happy with her eye movement and mobility. The only concern our doctor has now is that her head tilt has not gone away, so she may need to have physical therapy for that.

      I completely understand what you are feeling and going through with your child. When our daughter was first diagnosed, the doctor we had at that time did not offer us any type of treatment, just basically to sit and wait. We opted for a second opinion and now travel to Boston Children’s Hospital for all of our appointments – they have a tremendous eye center and wonderful doctors. Good luck!

      Like

  70. Hello all,

    I have a 4.5 year old girl who has Brown’s. We have been told that surgery is dangerous and not an option. This is a child who complains of eye pain, dizziness and eye dizziness almost everyday. Has anyone experienced these symptoms? Also, wondering if others are off balance a little…..any suggestions of how to relieve this discomfort would be much appreciated. We do ice packs and sometimes ibuprofen, some arnica…….I feel so bad and helpless. THANKS

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  72. My son is 8 years old and was diagnosed with Brown’s Syndrome when he was three. You cannot notice his condition unless he looks up. We were first told that surgery could resolve this, but later told it is risky. My son’s reads in the 96% percentile for his age, so his reading is not affected. He does not complain about eye pain or headaches, but recently said he cannot see the board in the classroom and is embarrassed. His classroom uses a permethian board (electronic) and I wonder if that makes it more challenging to view from his perspective. His opthamalogist told us to expect nearsightedness and that seems to be coming into place now. His gifted testing revealed superior for all but the category for forming patterns with objects. I wonder if his perception was affected by the Brown’s, or if this was a processing skill unrelated to the condition. We are so blessed with our beautiful son and don’t feel his Brown’s syndrome will affect his life skills negatively. I believe he will accomodate his condition successfully. I enjoyed reading many of your posts and now realize how many have similar experiences to ours.

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  73. Meghan brookler :HI!! May I ask where you are and whom your doc is?? In DE I am not having the best support…..
    Thank you so much…I am so glad to hear your daughter is doing well!!!
    Blessings to you and your family

    Meagan, We live in Arizona and my daughters Dr is Dr. Brendan P. Cassidy (ABC Childerns Eye Specialist). He has been a leading children’s eye surgeon specialist and a blessing to our family. You may want to reach out to him or his office to see if he could provide you a referral of someone in your area? My best wishes to your daughter and your family!

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  74. Hi
    I am not a parent of someone who has brown syndrome but I have it my self. I have had it dice birth and was diagnosed at a few weeks old. I am 17 now.
    I have it in my left eye and I am unable to look up properly and I have very little control over my eye when I am tired.
    I am in constant pain with it, I was wondering if it is worth asking to have the operation to and correct it?
    Hope you can help.

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    • Hi Daimon,

      I would suggest it is worth the inqury, if nothing else you would know your options. Now from this message board it appears that in the UK it is more difficult to find a Dr who understands the condition enough to offer options. We have been blessed in the US and have had a wonderful Dr in my daughters life that has helped tremendously… My prayers are with you and hope you find some relief!

      God Bless, Tanya

      Like

      • Hi again…I’ve been interested to read recent posts about kids who have had surgery (in the US only it seems!) and the person who struggles with Brown’s. It’s hard to read, but at least sounds very honest. Im often abit sceptical about sufferers who say I have eye strain , headaches etc but it doesn’t affect my life!? I do hope there is some options for you.
        Anyhow…update on my son’s progress – after reporting changes in my son’s vision and lots of head tilting we have seen the specialist today. They have recommended an MRI scan to check the eye sockets and check what is
        causing the restriction. As his Brown’s appears progressive there is some concern, apparently BS is usually quite stable. At least this way we will have more information to go on. Keep up with updates x

        Like

        • K swain, As someone who commented earlier saying that those sorts of things don’t really affect me (my earlier comments are under Vivi- don’t know why wordpress changed my name around like that!) I guess I’d just have to reiterate what I said in an earlier comment – you adapt to it and it becomes not that big a deal.I’ve had BS my whole life and so don’t know any other way of living, so to me it’s normal. Maybe not the best or most ideal normal, but when it’s all you know…

          Hope your son’s eyes stabilize!

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    • Hi Daimon,

      I’m a few years older than you (I’m in the first half of my 20’s)and have BS, but have not had the surgery. Have you seen your eye doctor recently and talked to them about your eye pain and poor muscle control? I would definitely make an appointment and talk about it, especially if your eye problems have recently gotten worse!

      Hope you are able to get some relief- eye problems are a pain!

      -Vivi

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    • Daimon,
      How are you doing? Have you found help? I wonder about your “constant pain”…can you explain more? My 5 y.o. has pretty consistent eye pain and what she calls “eye dizziness..” sometimes she has spasms and sobs…..

      Thank you

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  76. our daughter was diagnosed with browns when she was 2. at age 6 it has almost gone away. the doctor said that this is unheard of. does anyone else know of this happening?
    her case was severe too!

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  77. My son has had 2 eye surgeries for exotropia. They were successful for a short period of time but now he has esotropia. In addition to the eye turning laterally, it does not go up and in fact cannot even go to midline. PO wants to do another surgery that includes 3 different procedures. One is a superior oblique tenotomy. Does anyone have any experience with this? I am torn. I want to do whats best for him but I dont know what that is. Thanks in advance for any input.

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  78. I was diagnoesed with brown’s (right eye)when I was approximately 13 months old (1975). My parents elected to have surgery for me. I ended up wearing glasses and having a second surgery around age 11. I stopped wearing glasses around age 13 and have 20/20 in the right eye and 20/15 in the left. I will say that I don’t see as sharply as I see out of my left eye, but it isnt really that noticeable. I am now 37 and have served in the US Navy for almost 11 years and am currently a Police Officer in NJ. I understand that you want the best for your childrenas so I for mine…but there is always hope…I am a living example. i only hope that if you do opt to have the surgery that you have the same happen for your child/chilren that I did.

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  79. Im 25 now and was born with that same eye condition, they didn’t realise I had it until I was 3 years old! It hurts when I try to look upwards towards my noise, but it only affects my right eye and I get double vision. However it may sound bad but it’s never been an issue, I just naturally learnt to move my head up rather than my eyes so I don’t get ‘bong eyes’ no body every notices it, well on a very rare occasion they might. It hasn’t got any worse as time has gone on

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  80. My son was diagnosed with browns syndrome when he was 4, back in 2005, no surgery was needed he just had regular check ups and now its hardly noticable.

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  81. My daughter has browns but they said it was to severe that they could not operate on it. She is 13 now and is doing well in school but is struggling when they read as she complains that the words and letters are moving and mixing up!!

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  82. Hi, i’am 14 and i was born with browns and i have something called stereoblindness (the inability to see 3d) it depends on different people but the backs of my eyes ache so much. ive had 3 operation each improving it slightly. I might me having another one soon hopefully the last its nothing to worry about its very safe… i also find it hard to see the board at school the words jumble and its almost like theres weird fuzzy colours around it. If youre child is in pain you should push for an op, if not there isnt much you can do. there are temerary eye drops but i found they dont do alot. hope this helps.

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  83. it dosent matter how noticable it is if u have the condition it is very stressfull because most people cant relate to it as its such a rare condition.

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  84. Hello, My 7 month old daughter was diagnosed with Browns and the Ped. opthamologist recommends surgery. My questions are… Has any one heard of other treatments or tried them? (besides patching, glasses or surgery) Has anyone else had an infant with this and what treatment route did you take and the outcome? Thanks for your help and any info would be appreciated

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  85. Im just reading this. My son was diagnosed with browns syndrome before his first birthday in 2011. My son did have the surgery since he was at a very severe state of it. Things had been going really well since the surgery (last month) but now he is falling constantly, and running into things (like walls) and with him being 2 years old, and not being able to communicate how he is feeling, or whats going on at times he has temper tantrums from out of now where, his drs are now pretty much saying that this is to be expected and that his eye movement or lack there of should not affect him falling, tripping, walking in to walls and definitely not affect his over-all behavior… if there is anyone else out there that would like to tell me how your child is copeing with browsn syndrome please contact me…

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    • hi-my son is also 2,i feel it is affecting his behaviour heaps-he never sleeps through the night,he screams and crys alot,never seems happy,or if he is it dosnt last very long before he starts crying again.He is having operation soon-he is on the waiting list.Just wish he could tell me how he is feeling.Feel terrible for my little boy

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  86. I just found this site, and I want to thank everyone for there post! I haven’t read all the post but all of them are very helpful. My son was diagnosed with B. syndrome when he was 4 yr. I noticed his eyes were different when he was a baby. Now he’s 6 yrs and has been to a specialist. She wants to hold off on surgery and that he’s doing fine. Now we don’t have to see her every 6 month and moved it to 8 months. Just today he told us he can see Two when he looks up and of course I’m now worried. His appt. is not for another 4 months. Should I wait?

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  88. Thank you Ashley, I will definitely call. Also my heart goes out to all that are experiencing pain, I’ll be on a close watch for that.

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  89. Hi!

    I’m Sammy and I have browns syndrome. I don’t know much about my syndrome, but I have it, I’m going to have the surgery to correct it ASAP

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  90. Ashley, are you finding help? I am so sorry. My daughter has intermittent pain and dizziness and was often falling and bumping into things…tantrums were what we endured every day, sometimes for hours. And that was with no surgery or diagnosis….

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    • Hi Meghan….I can understand that you feel helpless especially as your 5 year old is in pain. It sounds like you are coping with alot and doing what you can. When I found out about my son has Brown’s in both eyes I really needed to talk and this site was probably the best thing for information and views from other people going through this. My son hasn’t really complained of pain yet he rubs his eyes alot, squints and the misaligned eyes are very noticeable when he’s tired. Sometimes I think he experiences discomfort but is either use to it or doesn’t like to say…!??! It doesn’t seem to be affecting his school work so far or reading. In terms of specialists from my research and this comments from parents here Boston Children’s Hospital is one of the leading hospitals. They are currently doing a study into genetic causes of stabismus and Brown’s which is on their website. Hope this helps and you can sleep

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      • Hi Meghan,
        My daughter had the surgery last January at Boston Children’s Hospital and we would absolutely recommend the doctors there to anyone. Over the last year, we have seen a number of doctors there and have only had good experiences. Good luck to your family – I know how difficult this is.

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        • Thank you so much. I am back to researching and will call Boston asap…any updates on your daughter? I wish the best for you all and my prayers are with you….

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  91. Hi everyone,
    I am wondering how many of you with young ones who have this are hearing them complain of pain, eye dizziness, and asking for ice packs…..my 5 y.o. goes in and out of this experience ( often complains of her eyes being dizzy and less frequently is in real pain). We have been to 2 specialists and I am now looking for a developmental specialist at the children’s hospital in Philly.
    We are also getting glasses with clear lenses and taping the one side for double vision….

    It is so hard to feel so helpless and to watch my child in pain. I am sure many of you can relate. Just needed to “talk”…thanks and good night….

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  93. Thank you Margo for sharing your story. My 26 month old was just diagnosed this morning and so I have been trying to find some answers as to what it is and lifelong effects ( ie. learning, sports, etc..) There’s not a lot of those answers out there. Thankfully I found this page, and reading your post gave me reassurance.
    Jon’s case is mild, only when looking up. His sisters do of course in courage it by saying “hey Jon, do the crazy eyes” and of course he does it so they will laugh. ( I have told them to stop). His doctor wants to monitor him, but says he believes it will stay at the same severity through his life. He says it appears his vision is good when he looked into the eyes after being dilated. Again, thank you for your post and words of encouragement. -tami

    Like

    • Hi Tami, My son was diagnosed with Browns when he was about 3 1/2 years old. His situation seems very similar to your sons. You can’t tell there is anything wrong with his eye, unless he tilts his head down and looks up to do the “crazy eyes”. Sometimes he does it on purpose because he can make himself see “2 of everything”. Anyway, he is now 6 years old and (knock on wood) I have not noticed any negative impacts from his Browns. He plays sports, does well in school, has friends etc. I have never had him complain of eye pain. His condition does not seem to have changed for the better or worse since his initial diagnosis. He just had his eyes checked at school and his vision was fine. While I worried about this quite a bit after his diagnosis almost 3 years ago, it has not had the negative impact I was concerned about. I hope that your son’s situation is the same.

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      • Hi Tiffani – I’ve returned to this board after a few years of being away and am so pleased to read that your son is doing so well, and that the B’s doesn’t seem to be having any kind of negative impact on his development.

        Reading your message to Tami above, I smiled when I read the business about your son deliberately doing the “crazy eyes” thing to enable himself to see two of everything – I was instantly reminded that I used to do the same thing as a kid to amuse myself, and my friends too!

        Best to you & yours,
        Margo

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    • Tami- I’m an adult with Brown Syndrome, and there haven’t been any learning problems, etc with it. Hope everything goes well for you and your son, and try not to worry too much. 🙂 I think that if you read the comments on this post from adults with it you’ll see that it’s not been that big a deal for most of us.
      -Vivi

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      • Sorry I was slow to respond but Thank you for your post. :0) it is nice to know that it shouldn’t cause any issues for Jon in his growing up. (after all, that sometimes is challenging In Itself! :0). ). Again, thanks!

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    • Hi Tami –

      With regard to your question about lifelong effects: I’ve never felt at a disadvantage compared to others with normal binocular control. No impacts to learning, reading, social interaction, career, driving, working on my computer, or sports of any kind. In fact, at 47 years of age, I’ve just started playing golf! I’m enjoying the sport quite a lot, and am even able to keep up with my sweetheart – at least in terms of aim & accuracy; he can hit the ball a whole lot farther than me, but that has nothing to do with the B’s syndrome.

      I can think of only a very few instances where I experienced any real eye discomfort or strain (not even pain really, more like a soreness), and those were so minor it seems hardly worth mentioning. I remember watching “The Titanic” movie from the front row in a theater and feeling a little disoriented afterward from having sat for so long in the same position with my head titled up and my left eye pushing at the boundary of it’s limited movement. But then again, I wasn’t the only one in the room with that same feeling, just the only one with Browns!

      Like anybody else, if I spend a lot of hours in front of the computer, my eyes get tired. I will say, I find it much easier to use a laptop where the screen is below my line of sight, rather than a desktop model where screen would be at or above line of sight. That may be a direct result of the Browns, but laptops suit my mobile lifestyle better anyway!

      Now that I’m a “woman of a certain age”, I’m just starting to feel the little aches and pains all over, but none of those seem to be a direct result of my overall carriage. I know I have a slight chin-up/head-tilt posture but it’s not at all noticeable in pics or video or even the mirror. Despite the Browns, I feel I’ve been blessed with a pretty darn good set of genes and I’m doing my best to age gracefully.

      As I touched on in my first post a couple years ago, I’m now have to use reading glasses. This is no big deal and drugstore (non-prescription) models have been working fine for me. I use the past-tense here b/c I think I’m on the verge of needing a real prescription as a result of the normal aging process, and am headed to the doc tomorrow for an exam. This will be my first visit in years, so it’s also worth noting that I’ve never had to have any kind of specialized monitoring or even retain a relationship with any particular eye doc. If I learn anything interesting after my appointment tomorrow, especially in regards to B’s syndrome & the aging process, I’ll definitely post again.

      From your description, it sounds like Jon’s case is very similar to mine. If that’s truly the case, have faith that treatment of any kind may not be necessary and that the condition will have little impact on his development.

      I hope I’ve been able to answer your questions and ease your mind a bit. Very best wishes to you & Jon.
      Margo

      Like

      • Thank you for the response. Im glad to hear all the positives :0). I am planning in being Jon’s biggest advocate, of course, and I will let teachers know in advance so they can sit him accordingly (not to close to the front as to cause extra strain). thanks for your update and good luck with your appointment and gulf games :0)

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  94. Hi ViVi,

    And all of you grown-ups with Brown’s…may I ask if you experienced pain, dizziness, and loss of balance growing up?? My 5 y.o experienced dizziness often and pain, pretty intense pain, frequently…..

    I have heard how you are now but did you go through this as you grew up? My daughter has always had this experience. It is heartbreaking- otherwise we would be able to deal for the most part….

    Thank you SO MUCH for taking the time to come and board for the wellness of all!

    Meghan

    Like

    • Hi Meghan,

      I’m sorry to hear about your daughter’s eye pain and dizziness. Honestly I can’t say that it’s been too bad for me with that, although it’s gotten worse for me as I;ve grown up, and I don’t really remember having those symptoms as a kid. Sometimes I do get dizzy if I use my eyes too much and in the “wrong” way ( by that I mean that some activities set it off much worse than others) and occasionally get eye pain. That pain can be intense but it’s usually short spasms that go away, and it’s almost always when I’m tired, stressed, or have had just had to do something that requires a lot of visual focus. I have noticed that screens, especially computer screens and to a lesser extent the TV, are triggers for me. Maybe less screen time (and I have NO idea how much time your daughter spends with a screen anyway could be 0 for all I know 🙂 ) would help?

      Something that I feel does merit being pointed out is that while I don’t really remember dizziness and eye pain that much as a child, it doesn’t mean that I didn’t experience it. It was only as I got older and started to realize that I saw things differently/understood that what I experienced with my eyes wasn’t normal, that I realized that the way my eyes saw things and the way my eyes would behave weren’t normal. So while dizziness/eye pain are more noticeable to me as an adult, it could just be that I thought that was normal as a kid, and I’ve always been very stoic and never let pain stop me.

      Sorry that I’m not more helpful and I get the feel that this might not have been the most coherent answer ever. It’s been a loooooong week. 🙂

      Vivi

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  95. Hello!My name is Jessica. I noticed my son, Connor, having “misaligned eyes” when he was just a little over the ageof two. I took him to several optometrists and Medical Doctors as he would often hold his forehead when his eye turned and would get nose bleeds. I was told on more than one occassion, that it was nothing major. That there ws nothing wrong with his eyes and that the headaches and nose bleeds were associated with severe sinus infections and/or allergies. As he got older it happened more frequently. I was then told that he was “far sighted” with a possible stigmatism. I trusted the diagnosis as I wear glasses for the same problem with vision. He recently, at age 5, had an exam that was conducted at school yearly for the “Oklahoma Preventing Blindness” program. It was once again noticed that he was having vision problems. I took him in to a different Optometrist yesterday afternoon to hear him being diagnosed with Browns Syndrome,a slight difference in sight ability between eyes, and also partially color blind. Yet, was also told that Browns Syndrome was very rare but that it would NOT effect his vision abilities individually. What I dont understand is that if he has this disorder along with “far sightedness” and color blindness, then why are they saying no treatment is needed at this time?? Not even any consideration of any type of glasses….I was told they were unecessary at the time being….Any advice or suggestions would be greatly appreciated!! Thanks!!!

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  96. hiya our Daughter was diagnosed with Brown Syndrome at the age of 3. She was operated on in moorfeilds eye hospital in london when she was about 5. no one in our family have any eye conditions and I was told this is hereditry. She is now 15 and her Browns is extreemly noticible but she oes not want any more procedures on her eyes. She loves the individuallity she has from her “crazy eyes” (as she puts it) she is very matter of fact when people ask her “how’d u do that?” even up to today when her friends didnt beleive she had a piece of plastic in her eye her reply was simply GOOGLE IT! once you get past the initial medical descriptions you find some very informative pages. the only question she has herself is will this ever get better?

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  97. Hi! Our 2 year old daughter was originally diagnosed with congenital 4th nerve palsy in her left eye. When we took her for a second opinion she was diagnosed with Brown’s in her right eye with characteristics of 4th nerve. Our daughter has a tilt to compensate her vision. Our doctor said that our daughter has an asymmetrical face. Has anyone else come across this? I guess one of my main concerns of a prolonged head tilt, is if it could cause any facial deformities. Anyone experience this?

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  98. Hi,
    My three daughters have been diagnosed with Brown’s. In my oldest it almost unperceptible & the Dr is not worred. My middle daughter, now in her teens had surgery. She definately had the head tilt going on. The silicone implant did help with eye movement, but I still see her tilt her head, and remind her to straighten it up. My youngest will have sugery on friday. He symptons manifested a bit differently. Not a tilt of the head, buy a raising of the chin. Hoping that 1 surgery is enough.

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  99. We noticed a problem with my son’s eyes when he was about a year old and started seeing a specialist at that time. We were told at that time that his eye muscles on both eyes weren’t quite right (one being too tight and one being too loose). Our specialist didn’t recommend surgery and gave is things to do to work on improving his muscles and suggested just watching it. Then when he as 18 months he began to have febrile seizures so we thought that maybe things were all related. He had an MRI of his head and a brain scan when he was 2 and all was normal. We were told he’d more than likely outgrow the seizures and we would just keep an eye on his development with regards to his eyes and coordination. At about 8 it seems he has outgrown his seizures and his eyes seem to have not changed any so we stopped seeing the specialist and followed up regularly with his pediatrician. When he was younger he would love to look at me and make two of me (t would freak out his grandmother so he had lots of fun with it).

    He will be turning 11 years old in just about a month and is doing great. He has played baseball since he was 4 and full contact football since he was 5. He’s learned to compensate for his vision problems (double vision and difficulty seeing things over his normal line of sight). He is a top student in school and in the gifted and talented program for drama. He dreams of being a meteorologist or movie actor someday. He is quite popular in school and friends love to have him make his funny eyes. Although he’s never seen what he

    However in the last 6 months to year he has been complaining quite frequently of debilitating headaches (to the point of nausea) and eye pain. We took him to our regular eye doctor to make sure it wasn’t a need for glasses and he found only a slight nearsightedness and recommended we go back to our eye specialist. Since our eye specialist had since retired to we went to a new specialist. In November he was finally diagnosed with Brown’s Syndrome and we were told that surgery was an option for him at this point since it was affecting his daily life functions but it was not necessary. There are things we can do to reduce his eye strain and hopefully reduce the amount and severity of his headaches. After much thought and research (and showing him what he looks like when he makes his eyes go crazy) he has told us that he would like to have the surgery so that he feels “normal” and so that his headaches go away. We have scheduled a follow-up with his Dr to discuss moving forward with the surgery. As a mother I am nervous to have him go through this procedure. I’m interested in hearing from parents who have had the surgery for their children and what their outcomes have been.

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    • Elizabeth,

      We have not been through the surgery as the docs we have gone to in the DE/PA/MD area have opted against it. My daughter is 5 and also has eye pain. She has an occasional “spasm” which creates pain that brings her to her knees. The last specialist we saw at Children’s Philly said it was time to see a neurologist as Brown’s is not usually painful. I have searched and searched for more info but can’t seem to find anything concrete about her symptoms. Anyway, we are making an appt for a developmental neuro asap.

      Please feel free to contact me. I worry about her future in terms of pain increasing extra. We will not be able to see the neuro for at least 2 months as he is so booked. In the meantime I am trying another therapy I can share if you are interested. It doesn’t sound like what your son needs, however, from what I have read here.

      Wishing you the best of luck with people around you to offer the support you need. It is worth mentioning that, from what I have read on this site, the doc you choose matters!! I know you know that but- I would certainly find someone who has had many successful Brown’s surgeries, who understands his pain symptoms and exactly where they stem from, and who is up on the most progressive treatments. There have been a few suggestions on this site in earlier posts…..I forget at this moment where some are- 1 is Boston…not sure where you are.

      Blessings now and into the future….

      Meghan B
      rookler

      Like

  100. I’m confused. It seems like some of you are taking about a lazy eye and some BS. My daughter had a lazy eye diagnosed ay 3yrs old from an actual eye exam at pre-school . We would have never know because her eye did not cross (she inheritated this from me but I was never diagnosed). I used one eye more than the other and without patching I become legally blind in one eye. It was ok though because I saw 20/20 although I have no depth perception. None of this affected my life. When the nerve was dying from not being strengthened I saw double for a while but it went away. Back to the original story. When my daughter was about 6 she said she was seeing double. I took her to our wonderful pediatric opthomalagist. He though it was BS. He did a paper on it In medical school. He put her on an a ibufrofen regimen (it’s high dosages and a weening off so you must speak to a doctor about it. The seeing double went away and that was 15 years ago. There is a big difference between a cross eye from (lazy eye, or amblyopia ) or browns syndrome. Browns syndrome has to so with an inflammation . Check other sites about BS and ibuprofen. Hope this was helpful

    Like

    • Hi Elise,

      Well, personally I am confident that I do in fact have BS not a cross eye from lazy eye. 🙂 That’s really interesting about the ibuprofen, although I am wondering if it is not applicable to all cases. According to this article:

      “Systemic and locally injected corticosteroids have been used to treat inflammatory cases of acquired Brown syndrome. Nonsteroidal anti-inflammatory agents (like Ibuprofen) have also been used.”
      http://www.aapos.org/terms/conditions/29

      That makes me suspect that the treatment isn’t necessarily for everyone since according to that same article:

      “These abnormalities [that cause BS] may include a reduced elasticity of the superior oblique muscle and tendon, a thickened tendon, a short and/or tight sheath, or fibrous adhesions (scarring) of the tendon.”

      FWIW, I am pretty certain that in my case it’s a thickened tendon or possibly that it’s too short (can’t remember which, lol) not inflammation. It would be really interesting to know though what percentage of cases are caused by each problem with the tendon.

      Anyway I your comment found the ibuprofen treatment to be very interesting, and hope that your daughter is doing well! 🙂

      -Vivi

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  101. My 13 yr old just had his Browns Syndrome surgery done a week ago today. He’s still having trouble seeing out of that surgical eye. For those of you who either had the surgery or child had the surgery do you know how long it’ll take before he gets his vision back in that eye?

    Like

    • My daughter was only 2 when she had the surgery so I can’t be exact, but the doctor said it was perfect at her 7-10 day post-surgery follow up appointment. Good luck to your family.

      Like

      • I have 2 children who have had this surgery. The second one this past Dec. The post surgery follow up the next day revealed her vision was perfect. We had our 8 week follow up on Friday. Her vision was still very good. Talk with your doctor immediately.

        Peace & Happiness, Kelly

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  103. i have brown syndrome and i was born with it. im turning 13 and i have never got any treatment.I was only aware that it was brown syndrome in 2011 but i just got glasses that move the direction of my eyes. 🙂 i still have it but i get less stressed and there is less pain 🙂

    Like

    • Saffron, I am sorry to hear that you have suffered stress and pain because of Brown’s in the past, but am happy to hear you have found some relief! Take care.

      Like

  104. My 6yo daughter just had surgery for her Brown’s Syndrome (the surgeon performed a muscle test while she was under and confirmed Brown’s). He placed a spacer on her right superior oblique muscle. She seems to be recovering without any problems and hopefully this will reduce her head tilt. One thing that people have not mentioned on this forum is that with a head tilt which compensates and allows a person with Brown’s to see is that long term if not treated could cause neck and shoulder problems and even arthritis. This is the main reason that I chose to go ahead with the surgery for my daughter. We called her eye her silly eye but had to think of her long term. Many adults on forums commented about how they wish they had it done as a child. I am sure we made the right decision and I wish you all luck.

    Like

    • My daughter had the surgery last year and she had a very severe head tilt. It took a few months and a lot of neck exercises, but her neck is perfectly straight (and her eye looks perfect too :))

      Like

  106. My 13 yr old had his surgery back in Feb and everything seems to be ok except his eye gets “stuck” sometimes and it’s not looking at me. Most of the time tho his eyes are lined up when looking straight ahead etc but I don’t know if the muscle is too loose or what. it’s disturbing to see actually. I will have to call the Dr yet again because at our last appt he said all was good and no need to return for another 6 months. He still has his head tilt but I imagine that will eventually go away.

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  107. We found out my 8 month old daughter has Browns and is starting therapy I a week, she will also be getting glasses. And the optometrist are giving her 20 % chance of improving :/

    Like

    • 20% is a bit harsh… I grew out of my Brown Syndrome and am more than 85% better!
      Yes that eye is weak and won’t be the same as the other but I’ve been told I am 100% free of it, keep positive. I’m fine!

      Like

      • Hello Kristy,

        Thank you for your post! I love to hear from older people who have this. I am wondering, did you and do you know experience pain? This is my main concern for my 6 y.o. She sometimes has intense “spasms” in her eye, often complains that her “eyes are dizzy” and has also exclaimed that it “feels like there are pins coming out of my eyes”…….

        Any thoughts on this? I am desperate to help her and have seen many people. I guess it is not normal to have such pain with Brown’e but this is our experience.

        Thanks

        Like

  108. Hello there! My name is Kirsty, I’m from Scotland and I’m 21.

    When I was just 12 months old, in 1993, my mum saw straight away there was something not right with my eyes. She took me to the hospital and when I was just 14 months old I was told I would always have to wear glasses.
    I was told I was long-sighted and there, on the spot, I was diagnosed with Brown’s Syndrome. No-one believed my mum when she said I had something wrong, but you know mum’s, they are always right.

    Now I see all your kids are having surgery at little older than 1 year. Why? The doctors are obviously having you on. I have grown up with this all my life and you know what, I have had no problems at all. Lived a happy life and had no surgery, just glasses.

    My form was pretty serious too, when I looked up my eye would literally get stuck in my head. One time my mum was on night shift (as a theatre nurse) and my dad was looking after me and my brother. I looked up and pop it goes. Dad panics like a mad man and runs me to A&E, we get to the door and I pull it down myself, turn and simply say “Haha”… I do not recall this, apparently my dad does…!

    I had control over it, your children will too but they will not know better. My form of Brown’s Syndrome actually was due to a muscle which had not fully developed leaving a gap above my left eye, creating my Brown’s Syndrome.

    I had sooo many tests done on me, loads of students came to see me because I was so rare, the only kid in the hospital records with it. So I would go in every 6 months for a check up. As I grew, so did the gap, it got smaller. Most likely all your kids will grow out of it too. Give them a chance and don’t jump on the band wagon. Surgery is most likely not needed.

    Being 21 I have now been told my vision won’t get worst, it has stabled and hasn’t changed in the past 3/4 years since I stopped growing. I have actually been told I don’t need to wear glasses if I don’t want to and can actually see fine. I wear glasses though because the eye that was affected is weak and doesn’t work as hard as my other one so I make it.

    Don’t worry, nothing will changed and your child will be fine, I wasn’t treated differently because it wasn’t a problem, it won’t be for you too. You child will wear glasses, oh dear. At least glasses these day are actually nice! There were none that actually fitted me when I was a baby…
    Anyway what I’m trying to say is surgery is unneeded. My parents were told I could have it, but more likely it will cause bigger problems later, plus it’s expensive and may not be needed.. wait it out and I was told by the doctors ‘Never look up! Mover your head up!’ Words of wisdom. 🙂

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    • HELLO KIRSTY!! THANKS A LOT!!! ITHINK YOU ARE ALL I NEEDED TO READ!!!
      NEVER LOOK UP, MOVE YOUR HEAD UP!!! ILOVED IT.

      ROCIO

      Like

  109. My daughter is 9 months old and she was diagnosed with brown syndrome, i would like to know how things will be like in her future.. is she goin to have problems in school? sports? studies? im feelin really sad .. i dont want to think that she might have a “limited” life . .

    Like

    • Darine,
      She won’t have a limited life! Read through the comments on this article for what those of use who are adults with it have to say. We may have some small eye problems but the overall message is that we’re doing fine. 🙂

      Best wishes to you and your daughter.
      -Vivi

      Like

      • Thanks vivi for ur reply.. I read many stories over here, some were good and some were heartbreaking which makes me wonder wat will my daughter’s story be like !!! Wish u all the best and thanksagain

        Like

        • Hi Darine, I know how it feels when you frst find out about a diagnosis and have to think through and deal with the possible future implications. Went through that when my son was given Brown’s syndrome diagnosis. Agree that the stories on here do differ and so its hard to be certain how it will affect our own children. My advice is research it and try to keep an open mind. This site is a good source of comfort and support, plus finding out about new approaches. We are now with St Thomas’s in London as the eye specialists think that because my son’s ymptoms vary that it may not be Brown’s and could be an ocular muscle weakness!
          Will find out more soon. Just shows how things are uncertain and affects each child differently. Hope you and your daughter get all the info and support you need.
          Karen

          Like

        • Thanks Karen for your sweet comment.. I wish u get the answers u want regarding your son’s case.. the thing is that my little girl got a very rare infection at 20 days old and she struggled really hard .. spent like 10 days in hospital and ended up with an abscess excision !! You can imagine how hard things were !! So since then Ive changed a lot.. hearin that now she has a “rare” condition as well makes me wonder, whats next ???!!!!! 😦 I’m not bein pessimistic but I can’t see her suffer anymore !!! Thanks Karen for your sweet comment.. I wish u get the answers u want regarding your son’s case.. the thing is that my little girl got a very rare infection at 20 days old and she struggled really hard .. spent like 10 days in hospital and ended up with an abscess excision !! You can imagine how hard things were !! So since then Ive changed a lot.. hearin that now she has a “rare” condition as well makes me wonder, whats next ???!!!!! 😦 I’m not bein pessimistic but I can’t see her suffer anymore !!!

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  111. My 22 yr old son was born with Brown Syndrome. Unlike most cases he suffer loss of vision in the unaffected eye. Surgery was never an option due to risk of vision loss in the affected eye as well leaving him with decreased vision in both eyes. He wore an eye patch for several years to encourage in increase in vision but it was never affective. He was monitored by our opthamalogist very closely while a child. At this stage he has severe vision loss in the unaffected eye but the movement in his affected eye is not a huge problem for him as he has become accustomed to it and has learned to compensate.

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  112. Our 3yo daughter was diagnosed with Brown’s Syndrome last year. We have seen many specialist regarding her symptoms and each specialist shruggs their shoulders. Wanted to reach out here to see if anyone else is having the same symptoms and if so could give us some advice on how to resolve her issues.
    -Our daughter’s right eye is her effected eye with limited mobility. Her left has full range of mobility. She has a tilt (chin to the left and right ear towards her shoulder) which confuses her physicians becuase her eyes show they are in allignment and wouldn’t cause this tilt that so many brown’s syndrome kids have. We have done ultrasounds to determine if the tilt is from Torticollis and test shows the SCM are symetrical with no masses. We have done physical therapy to correct it and today our neurologist informed us that the only way to fix the tilt is through surgery or botox injections to “loosen” the muscle. Our physical therapist disagree’s that surgery will work because she does not believe it’s a muscle issue since she has quite a bit of range in her neck. Our daughter also has an Asymetrical face with her left side being fuller than the right, her left ear comes out further and in the last few months she has started talking out of her right side of her mouth more. This is also confusing because with her right ear pulling downward to her right shoulder one would think the right cheek would be fuller and sagging do to gravity. Our neurologist ordered an MRI to look at her brain and spine but believes it won’t show anything. On top of her facial concerns we are learning from our physical therapist she holds her weight on her right side of her body and when stepping with her left she looses balance. Her feet turn inwards and right hip is slightly turned inwards.
    All of these things seem minor but when you add it all up it does cause us great concern. Especially, if physicians can’t figure out where the tilt is coming from. We fear if the tilt isn’t corrected, what difformities could occur to her face? If anyone else is facing some of these same issues, please contact us! Thank you! nannette.clark@hotmail.com

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  113. Tonya, What part of TX are you in? We are in Houston and can recommend some Pedi Neuro-Ophthamologists.

    Tonya :
    Well my 13 yr old son just this last yr had 2 surgeries for his Browns and sadly it really hasn’t helped. He had a myectomy and a tenectomy and his eye still wanders. It’s almost a completely different problem. He can usually shake it back to his control. We moved recently to TX and have the name of a new ped opthamologist that I will def be calling as soon as our insurance comes through. He gets upset with me for having the surgery and I almost regret it. His head tilt is better that’s for sure but now he sees double more often than not which I can only imagine is very bothersome for him. Sad…

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  114. Hi, I’m 18years old and I was diagnosed with browns syndrome in both eyes when I was two, my first surgery was when I was four ,my eyes were straightend out better but one eye was still floating a bit , so I had surgery done when I was 13 on it , it was straightend out as much as they could with the extenders they put in my eyes, but till this day they said my eyes were as good as there gonna get and wich they are , the only problem with this is I have wear glasses for the rest of my life & control my right eye , because if I let it go it sorta wonders, but don’t get me wrong i’am very great full for what my dr had done for me , hopefully this gives you an insight of what to expect from your children as they grow older

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  115. Just moved to the Dallas area, does anyone have a good Ped opthamologist they can recommend that takes Medicare? My 13 yr old had 2 surgeries in WI before we left for Browns and it’s still not “fixed”. Anything is appreciated.

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  116. Hi Tonya,
    We are going thru the same issues with our son. He was dx with Brown’s when he was 3yrs old. He was born cross eyed and the pedi said it would go away within a mth, and it did. I too noticed however, that at age 2 his left eye was not able to look up while his right one did. We also did the patching of his good eye. We started off with one hr then 2 and upto 8hrs. Our Dr told us in March that he need sx and refered us to a Dr in Plano, TX. My son is now 6 and this July we took the 11hr drive and he had the sx. Right after the sx you could see a 50% improvement. But now, 1mth later we are back to square one. His Dr in our home town now has said he needs glasses.. we don’t know where to go from here because it’s affecting his performance in school. He’s having trouble reading because he sees double. Any suggestions in how to help my son would greatly be appreciated.
    Maritza

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    • Thats our problem n why he had the 2nd surgery. Seeing double is a possible side effect n if surgery cant fix it then prisms r an option. But they are thick glasses. My son had a tenectomy 1st then a myectomy the 2nd time. Not sure which type of surgery urs had. Just went to the eye dr ourselves n she said they try vision therapy first. So im right there with u on what to do next.

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  117. Hi my name is Brittni. I was diagnosed almost a year ago, I have been living with it my whole life, I am 16 and a junior in high school. I had surgery last November and it worked for a while but now I need it again I am having it this November just 2 days before thanksgiving. I hope everyone who has it gets help for it!

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  118. Hi im Vicky I’m 29 years old I ŵas told I had browns when I was 13 i Opted out of the surgery and I’m doing perfectly fine I was told that driving would be an issue for me but it hasn’t been i was told that i could loose all movement of my eye if I had surgery hence why I declined I’m finding it does no

    t bother me! But then it only effects me when I look up in my eyes you can live with it, but it depends on the individual. Xx

    Like

  119. And no one still mentions a doctor for anyone. I think a list of doctors and there location would be very beneficial for anyone that approaches this or people who are still struggling looking for that specific specialist.

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  120. My Name is Bridget, and my Daughter Courtney who is now 4 was diagnosed with Browns Syndrome over a yr ago. She has since had 2 MRIs (the first to check the diagnosis and the second to check on a cyst that was found in her pituitary gland which has just up and vanished. Hey I’ll take a miracle!) During her last MRI she also had a “range of motion test” Where the Dr used forceps to dislodge her tendon which was (as the Dr put it ) “Locked into place.” He used a Steroid injection, and aspirin regime; but it didn’t work long. Her Dr said that the injection failed, and she is now scheduled for Surgery (finally) next week. It’s been an on going battle with the Insurance Co (but we wanted to get this taken care of while we still have access to a great Children’s Hospital here in Louisiana; since we are a Military family, and scheduled to move again (not sure where yet) in 10 months. This will be her first in a probable 2-3 set of surgeries.

    I guess I’m just nervous about her having this surgery. He says they are either going to replace her tendon completely, or splice it in order to elongate it. He said they would have to see what it looked like once they were inside to figure out the best way forward. Either way he said it’s pretty invasive, and he was kind of scaring me b/c he was saying that they have to remove her entire eye from the socket in order to work on the tendon/ “pulley system” that is keeping her tendon locked.
    WOW I’d rather not think of that but what else are you gonna do, right?

    We see Dr. Leon an Ophthalmologist at Children’s Hospital in New Orleans LA.
    I really like him. He’s very no nonsense, and down to business, the Type A in me appreciates that about him. I would recommend him (so far) to anybody in the New Orleans area.

    Like

    • Her symptoms at first were that her eye would turn in, and up randomly. When you look at her straight ahead she looks perfectly normal. Some times (mostly in her baby photos) though I noticed that her one eye would turn in/up slightly. She doesn’t have the head tilt (but then again she is 4 now, and can’t sit still for longer than a nano second.) Every so often she will mention “I see two mommies, or two daddies” Then I gather she is seeing double.

      Our one Pediatrician said “she will grow out of it.” But he was saying that to get me out of his office b/c he and I didn’t get along and he FLAT out refused to give me a referral to an ophthalmologist. (Just like he refused to give me a referral to a Pulmonologist or an ENT for my son who has Asthma, and had a 4 month long double ear infection that wouldn’t clear up after 7 rounds of antibiotics. I was NOT a happy momma!) I threatened to report him to our Insurance Co, and anybody else would listen to us if he didn’t refer us. He did finally, and although it practically took an act of congress, we finally after miles of red tape, were able to switch pediatricians. We are much happier now with a much better Primary Care Manager.

      Every so often now she will do her (we call it) “Crazy eyes.” Where she (it seems almost purposeful) that she will turn her eye all the way up, and in, and hold it there. Mean while her good eye she forces down and in. (At first they thought she had a Superior Oblique Palsy in her other eye, but it either seemed to correct itself, or IDK what; but the Dr says it’s a non issue now.) The first handful of times It happened (her crazy eyes) she was just kind of staring off into space, but now it seems like she kind of does it on purpose to make her little brother laugh. It’s not very often, and we tell her not to do it, and she seems to be able to control it; but I worry about the strain it puts on her eyes. She has 20/20 vision (thankfully) so the Dr has not recommended patches, or glasses.

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  121. I have a 5 year old girl who was diagnosed with browns syndrom when she was 6 months old. She has had 6 surgeries. She now has migraines and is very sensitive to sunlight. Has anyone else’s child experienced this a year after surgery?

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  122. My 2 1/2 y/o granddaughter was just diagnosed today with Brown’s Syndrome. We have noticed the symptoms (wandering eye when drinking from a straw and other instances) since about 1 y/o. The occurrences were fairly infrequent and we could never duplicate while in the Dr. office. Her ophthalmologist (who is highly regarded in this area – Detroit Metro area) recommended against surgery. He said her sight is perfect in every other direction except up and the main reason she looks up so much is because she is smaller than everything/everyone she is looking at. He stated that the surgery can help some but also weakens the affected muscle that is modified/stretched. He said as she gets older that she will adapt by tilting her head upward to see. He also said that adults only look up 1% of the time they spend using their eyesight, due to the fact that they are at the same level as most other people/things when bigger people (unlike children who spend a great deal of time looking up because they are smaller than most things/people). All of the things he said seemed to make sense at the time of the appt., but now I’m a little concerned with some of the other issues that people have brought up here… double vision, blurred vision, trouble seeing the blackboard, etc. I mentioned to him that she complains of the sun hurting her eyes. He said that that could be related to the Browns. He wants to follow-up in 6 months which we have been doing for her vision since birth, due to her low birth weight (3 lbs. 15 oz.). I am going to discuss it with her pediatrician as well and get her feeling about whether she recommends a 2nd opinion. The surgery results don’t seem all that favorable from the people represented here so I’m not all that anxious for that option but want to explore all options that are best for her. I’m going to try and take better notice of her during activities that might involve looking up, such as playground activities and ask her pre-school teacher to observe her at school as well. Thanks for all the sharing here. It was very helpful.

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  123. staceycachat :
    HI Tanya,
    I was wondering who your surgeon was and where your daughter’s surgeries were at? My son was diagnosed at 18 months and has been recommend to have another surgery (he is now 4yrs old). I’m a little nervous because I know these cases are rare and I want to make sure that I use a surgeon who is experienced. I’m in south FL but willing to travel to find the right doctor.
    Thanks
    Stacey

    Stacey, my daughter is 10 years old and was diagnosed in her first year. Brown syndrome is gone. At that time (2003) the only doctor in the USA that was doing surgery to correct this condition was based in Dallas area, TX. We were in the process of moving to TX so it was just great. Doctor Leffler corrected her eye about 5 years ago. In his waiting room in Plano TX I see kids and parents from all over the USA that come here to get treatment. One thing I will tell you. Time is crucial when comes to treatment. Kids that have this syndrome have a limited depth perception that can be increased only by a certain age. Doctor Joel Leffler – 972 985-1233 – Today I am sure other doctors are doing surgery to correct this condition but when comes to strabismus in kids, I Believe, Dallas area is ahead of them all.

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  124. Hi my son has browns syndrome and we have been told that he can now be referred for surgery! I was wondering did your daughter have the surgery? Thanks. Sue

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  126. My 3 year old was diagnosed with Brown Syndrome last year. Would love to chat with other parents who’s child has this. We live in the U.K. and there seems to be no call for surgery with this? Any feedback/experiences would be greatly appreciated. 🙂

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  127. My daughter was diagnosed with BS when she was an infant. We did see an ophthalmologist and he said it wasn’t severe enough for surgery and it should not be a bother. However over the years she has complained about sitting in a movie theater , reading, motion sickness, “headaches’ or pain around her eyes or being on the computer, phone for a long period of time. She has had “vision” exams over the years just for check up and was given glasses only for reading “if needed” when she was in middle school. She is now 22 and has recently been having issues with dizziness. We are schedule for MRI and they have to other testing in which they notice some “movement” disruption – slightly when they did a specific test. I will say she was told her ears were full and she has had some fluid in them which could cause some balance issues. With that being said she has been complaining more with headaches over the eyes and the “dizziness” when she is on her phone texting or surfing internet and last night she went to the movies ( which she rarely goes to) and came home saying she felt off and was dizziness or off balance – said it started just after the movies started. I’m just wondering if all of this is related to the BS ? what are your thoughts ?

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  128. Hi

    My eldest daughter (now 8 1/2) was diagnosed with BS when she was 3. We visited the specialist every year until she was 5. We where told that things may improve but an operation may be an option later when she was older. Until recently she seems to have managed ok, using glasses and with us monitoring her.
    We have, more recently noticed she has been complaining of headaches at night time. We took her to the doctors thinking it was possible linked to the fact that she was a fussy eater. She had a blood test to check for anaemia etc but the results all come back fine. I must admit since she had the blood test she’s eating what I would class as a good balanced diet. The headaches seem to have disappeared for now, but it’s only since today, my youngest daughter (3 1/2)had a 2nd eye test in 6mths and is also now being referred (her vision is 6/15 in one eye and 6/21 in the other) it’s made me really start to research possible issues, symptoms around BS.
    In regards to my eldest daughter I’ve noticed a lot over the last 12months a reluctancy to read/write. It takes a lot of encouragement & effort on my behalf to keep her enthusiastic.
    As a talk a lot family, hopefully very in tune with the children’s we spend a lot of time supporting their educational development at home. Until now I have put some of this reluctance down to age, attitude and her just being stubborn at times.
    At this point I may be completely wrong to try to link BS with her possible learning abilities but as I know what she’s capable of doing (and is very bright) I just wonder is BS affecting her more than I ever thought. I also now have to wait for the specialist appt to establish if my youngest daughter could also be suffering from BS.
    I’m trying to go with my gut feeling and over the past couple of years I’ve suffered many headaches, blurred vision, dry eyes myself but as a busy mum who studies I’ve just learnt to get on with things. I’m also thinking that this rare disorder has probably come through me.
    At this point in time – I firstly just happy to have found other parents who may shed some light on a area which has limited information (apart from the obvious).

    Sarah Martins

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    • Hi, my name is cece and I was born with browns syndrome i’am 20 years old now and I just wanna say it gets better it’s all about trusting your gut as a parent and finding the right doctor to fix your child’s eyes so many doctors told my mom I would be blind , it would never get better etc.. But she looked high and low for a wonderful specialist I am so grateful for I received surgery on both eyes at age 4 and surgery at age 13 to level out my left eye more. My eyes sight will never be 20/20 and I might have to wear glasses but it’s not so bad , your child will get headaches there eyes will hurt . Even after surgery there eyes will wonder mostly when there tired .

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    • Hi Sarah,

      I too have a son who at 3 1/2 yrs old was diagnosed with Brown’s Syndrome. I can tell you that my son has struggled with his studies. After being seen by specialist after specialist, and patching for years we were referred to Dr. Staeger in Plano, TX. Dr. Staeger recommended surgery of his left eye and told us it needed to be done sooner than later. Dr. Staeger was great and Cooks Childrens hospital was outstanding as well as the anesthesiologist Dr. Christy. This July will be a year since he had surgery and we are still struggling with his education. He still gets frustrated because he sees double at times depending on where he is looking and we have to darken the lines on his papers so he can stay on the line. He now has been diagnosed with dyslexia.

      Don’t try blaming anybody for BS, just do the best for your daughters. Follow the mother instinct that is inside of you and do everything humanly possible you can for them. Look for the best doctors and take them if you are able too. We took the 10 hour drive to go see Dr. Staeger and stayed in Plano for 11 days and turned it into our summer vacation (which we are still pay), but my son has not complained of headaches like he used to and has better hand eye coordination. I know he will eventually need another surgery, but for now he is a much happier little boy, stubborn but happy.

      I hope everything goes well with your daughters and we are all here for you if you need to talk. 😉

      Maritza Duncan

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  129. Hi, I’m in the uk and my 9 1/2 month old daughter, Eliza, has just been diagnosed with Brown’s syndrome (2 days ago) and I just stumbled across this site. She doesn’t have a head tilt so she doesn’t really require any treatment, the hospital just want to see how her sight develops.

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  130. Great to read all your comments. My 15-month-old has had misaligned eyes since birth so we started seeing a PO at 4 months. It took a year of observation before the doc mentioned BS because the left eye was not fully mobile and specifically having trouble going up. That got me in a panic as the spectre of surgery started to appear and I scheduled an appt with a second PO at the Shiley Eye Center here in La Jolla, Ca. That doc observed my son and said he suspects a congenital fibrosis OR fairly severe case of Brown Syndrome. Apparently BS would be the better of the two. Now we go for a MRI next Friday to make sure there isn’t anything constricting the movement, and from there I suspect real discussion of surgery will take place. The doc says surgery outcomes in his case would likely be “not fantastic” but we feel that if it could just improve (but not fix) the mobility we need to try. I’ve consulted with a behavioral optometrist and read a bit about vision therapy, but it sounds like our issue is likely structural versus functional – i.e. no amount of therapy would change it. I hope the experts have painted worst case scenarios for us and that we end up being happily surprised. For now, our boy is doing great – does not run into things, developmentally is ahead of the curve, and has good hand eye coordination – so we think he is seeing well and has at least some depth perception. The misalignment is noticeable but of course we think he’s perfect as he is … it’s all just so hard. You want to do surgery early so you don’t miss a “window” but then you’ll always wonder if it was necessary. Thanks for reading and being part of this community of parents who just loves our children so much and want to give them the best possible outcomes.

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  131. My
    Daughter was diagnosed with browns syndrome today she is 3 months from being 3 we went to children’s in Dallas and it is not effecting her posture and they said there is no need for sugary!!! We go back in 6 months for a check up
    Said the sugary will only improve the symptoms but there is no cure basically for it

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  132. Just wanted to leave an update that my son’s MRI went pretty smoothly (a relief after weeks of worry) and we got a call the same day confirming that everything was normal – no masses, growths, or anything else of concern. All his muscles look to be normal but the nerves are harder to see. Next PO appt is next week, 8/6, and hoping this doc will analyze the imaging, observe my son, and hopefully have a more optimistic outlook for his prognosis. We would be happy to find out he has Brown’s Syndrome versus congenital fibrosis. Best wishes to all and congrats to those experiencing progress and good outcomes!

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  133. My sweet babe is going in for surgery on 9/16. Please say a prayer for us and I will post an update after surgery, when I feel we have a good idea of the result.

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  134. Don’t want to get too excited but have to share – just today we noticed some very spontaneous and unexpected improvement in my son’s left eye’s mobility! It’s been months now of thinking he has congenital fibrosis or Brown’s Syndrome, and lacks the muscles needed to move his eye up, and then earlier this week I noticed it moving up a lot more than before! We have surgery scheduled for 9/16 but this gives me a glimmer of hope that we can postpone surgery … or even eliminate it altogether and focus on vision therapy! I will be closely observing him (and taking obsessive amounts of pictures) in the coming days. I have taken pictures and the difference really is dramatic. Since Monday we’ve noticed that they eyes have been working together well and the left is definitely no longer “stuck” looking more downward.

    In case anyone has a similar issue and is curious about the evloution of our situation – . His first year we didn’t notice that it was a specific issue with his left eye elevation, just that the eyes were not working right together – “something” was not right but we could not pinpoint it. In fact, it was the right eye’s tendency to roll up and out of alignment that had us most concerned. So at ten months, our PO prescribed two months of atropine in his LEFT eye. Almost immediately we noticed improvement in the right eye coordination, less rolling. After two months (and after the atropine had worn off) we went to the PO for a check-in, and at that point, she said she was noticing the issues with the left eye and mentioned Brown’s Syndrome. From there we were referred to a Neuro Ophthalmologist and I knew discussions of surgery were imminent, so we sought a second opinion at Shiley Eye Center in La Jolla. That specialist noted the left eye mobility problem too, and suggested congenital fibrosis or a more severe case of Brown’s. So since then, we’ve just been on this stressful track of deciding on surgery at his suggestion, and waiting for the pre-op appointment on 9/8.

    Now I’m wondering if penalizing that left eye with the atropine may have contributed to the mobility problems! I looked through hundreds of pictures since birth, and was unable to find any where he was definitively looking up with the left eye, but I do have the impression that it has been worse since the atropine. It’s now been four months since the atropine, and no patching since then, and the improvement seems pretty sudden. I’m praying it continues! The MRI we did in July did show a difference in the muscle on the lower left side so we assumed we were indeed dealing with a major innervation/structural problem that we had just kinda missed in his first year … the whole thing is very mysterious and it’s like we just keep piecing it together with every new tidbit of info we get.

    So my takeaways are – be cautious about excessive patching/atropine, and also know that spontaneous improvement IS possible.

    Thanks for reading, friends. I’ll check in after we see the PO on 9/8 to decide about surgery.

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    • I do not believe it was atropine that effected the left eye. My daughter has a similar condition to your son’s. Condition of her left eye was becoming more severe while she was growing up and now she is almost 6 years old and it is worse than ever before; no atropine used or any other medicine, only patching of the weak eye to prevent it from becoming passive. A neurologist specialist have told me that it has to do with third nerve palsy and is related to this part of the brain. If this is the case than it practically has no cure, which makes me really really sad. But, as they say, never lose hope in God’s help

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      • Interesting you are drawing a parallel when we actually have seen improvement in our son’s eye? We have seen three pediatric ophthalmologists and none has mentioned third nerve palsy.

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  135. My son was diagnosed with Brown’s Syndrome when he was about 3 1/2. He is now 6 1/2 and in 1st grade. It would be nice to talk to some parents who have older children with Brown’s so I can find some help dealing with school and his eyes.

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    • Hello, I’m a 27 female and I have this syndrome, just to point out its a syndrome I AM NOT Diseased! You can only tell when I look up so you naturally learn just to move your head up instead of your eyes. I even forget which eye it is in, I think the right. When I do attempt to look up I get double vision and it feels as though I am pulling on my eye muscles, plus if u look up constantly for a long period of time I get headaches. This all makes it sound bad but its actually not, I forget I have it and only about 2 a year have moments where my eye feels sore. No one noticed in school bar one lad out of a high school of about 400 kids, and since being an adult no one notices, although I do look up as a party trick! Haha. I found this web page as I was googling just to check the syndrome can not become worse which I think is unlikely touch wood! But I am going to get my eyes tested soon anyway. Plus I never had patched or glasses it doesn’t make a difference. The issue is there because the tendon is too short on the eye, wearing glasses and patch will not make the tendon longer, these are only good if the eye is lazy too. I would advise not to get surgery unless others notice it. With mine they don’t so have been ok up to now. Just to note I very small as well so always would need to look up but you learn not too and just move head instead.

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    • My son is also in first grade. He was just diagnosed and has come home with sore eyes and headaches complaining of the light on numerous occasions. Have you had any success helping your son succeed in school?

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  136. I am an adult with browns syndrome. I will admit the headaches can be annoying but my glasses help me not to strain as much. I now do not have double vision. I have prisms and spherea in my glasses and they really help.

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  137. Just an update that Teddy had his surgery yesterday and doc confirmed my son has/had BS, a relief compared with congenital fibrosis which is much harder to treat. We are in the recovery phase so his left eyelid (which has stiches under it from surgery) is swollen, so he needs some time before we’ll be able to determine the results. Surgeon seemed very happy and optimistic so fingers crossed! Yesterday was a rough day but he was basically himself today. Will write more when we know more.

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  138. Hello, It is so refreshing to have found this thread. My son is 6 and was diagnosed with browns syndrome a week ago. We are in Canada and are seeing specialists at BC Children’s Hospital. I was told to give him advil 3 times a day to take down any inflammation that may be causing his symptoms. He has had double vision for about a month and is now complaining of sore eyes and I believe he is getting headaches. Just under his left eyebrow (the affected eye) it is tender to the touch. He also says that the back of his head hurts. He has had an MRI and the results are normal.

    He has come home from school 3 times in the last week because of light sensitivity causing sore eyes and headaches. His teacher sees him uninterested in school work and covering his eyes. I think the florescent lights in the school bother him more than lights at home. It is heart breaking to see this behavior from my fun, social and normally happy child. He is short tempered and has very low patience for his 3 year old sister. I can only imagine the adjustment he is going through. I am uncertain if he will get used to it or if this will continue to affect his school work. Either way it is hard as a parent to watch. I am feeling helpless that I cannot take his pain away.

    I have put him on an anti-inflammatory diet also known as an elimination diet. I am hoping this will aid in treating any inflammation around the tendon naturally as well as heal his gut as he has also had many stomach issues in the past. He was not born with Brown’s to my knowledge though he has always presented a squint in his left eye when smiling. My doctor tells me it is unrelated. Today he seems pale and low on energy. I don’t think he is sleeping well at night. Could this be from the pain in the eye or headache?

    We see the Doctor again tomorrow for a follow up. As well we are seeing Felisia, a Rolfer who has had success with a client’s son diagnosed with Brown’s Syndrome next Thursday. I contacted her through this forum.

    Any insight on how to help him deal with these changes and symptoms is appreciated.

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    • Hi Stephanie, We are in Canada also, in Toronto, and my 3-year-old daughter has just been diagnosed with sudden, onset, acquired browns syndrome. She also complains of double vision and light sensitivity. Her head is now tilted to compensate. She has also been prescribed an anti inflammatory. Im wondering if we can chat. Did his Browns Syndrome resolve itself?

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    • Hi Stephanie, how is your son doing now? My son is also similar age and having a hard time at school due to his Browns syndrome. Any advice?

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  139. I did have an opportunity to work on Stephanie’s son eyes and she has reported back that after one session with me, he has really improved. I have not seem him since he initial session with me she reported back that there is significant improvement in his eyes. She is preparing a testimonial for me to post.

    I’m excited to have this opportunity to help children heal their eyes and would encourage parents to contact me before surgery. I’m finding that Brown’s Syndrome seems to be related to birth trauma and other closed head injuries.

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  140. Hi, I’m in the uk, south east and my 10month old daughter has been diagnosed with browns syndrome in her right eye today. A little scary as never heard of it before but feel more hopeful after reading comments on here. Has anyone in uk had surgery for this or is it just us that carries out surgery? She also has torticollis so a bit concerned about the tilting if the head the browns syndrome causes as been trying so long for her to correct this condition.

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      • Hi felisa, I would really like to hear more about how to reverse the browns. I’m noticing it a lot more in my daughter now, she has just turned one and we have her consultant appointment just find through for end of this month. X

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    • Dear Julie,
      Sorry to hear that, I know how it feels, my daughter was diagnosed when she was 9 months old. It was a big shock and I didn’t sleep for several nights trying to understand what does the term means.
      My daughter is now 2 yrs and a half, we live in California, her last appointment was last November, her ophthalmologist was really happy, he couldn’t even see the condition since she got used to living with it and she simply move her head up when she wants to look upward.
      I wouldn’t rush a surgery unless it became a really big issue because you never know how things progress. My daughter was always tilting her head and that broke my heart, now she doesn’t do that anymore, she only move her head upwards if she wants to look up !!
      I think tilting the head would change by time as she becomes capable of walking and controlling her movements more and more. at least that’s what I felt with my daughter.
      I hope I was a good help for you ..
      God bless our little daughters 🙂

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  141. Thank you all for sharing your stories! It brings me comfort to know others are struggling with making the right decisions for their children with this affliction.

    Our 6 year old daughter was just diagnosed with mild Brown’s. We had arranged for a private occupational therapy evaluation because she seemed to be having a lot of frustration with reading and writing. The evaluator noticed some irregularity with her eye movements when tracking and recommended that we follow-up with a developmental optometrist. Upon the optometrists examination, a diagnosis of Brown’s was given. Our daughter was also a little far sighted but glasses were not recommended at this time. What was recommended was vision therapy, asking the occupational therapist to investigate visual perceptional issues, contacting a separate school-based vision therapist to assess the potential need for modifications in the classroom and doing some exercises (which I will share) regularly.

    I guess my conundrum with the diagnosis and treatment recommendations is the lack of individualized assessment on the part of the visual specialist and the somewhat general kitchen sink approach to treatment. To what extent is this syndrome affecting my child’s perception to learn &/or take in visual information without strain or frustration? She has what appears to be controllable double vision meaning she reports and demonstrates that it only happens when she purposely gazes up in a certain manner. She does complain of headaches and eye fatigue with more regularly though task avoid ant behaviors is difficult to rule out when doing homework. The eye doctor reported that she has significant difficulty tracking horizontally. But, apparently she is in one of the stronger reading groups at school and is advancing at an above average rate. She is somewhat klutzy in general and will fall or bump into things but we are not sure if its a perception issue or an attentional one (her brain seems to run faster then her actions). The misalignment of her eyeballs is not noticeable so social ramifications are not applicable here.

    Do I send her to OT and VT regularly and potentially create an insecurity or a fallout clause for future academic tasks? My daughter, is extremely bright but often lacks motivation in regard to school work and will give up immediately if she faces a challenge or has an excuse to delay task completion. I want to give her everything she needs to see properly, I just do not want to make the wrong decision.

    Your input is warmly welcomed and greatly appreciated!!!

    Recommended Exercises from Eye Doctor:
    1. Blow bubbles above your child’s head. Encourage them to follow the bubbles only with their eyes. Ask them to wait until they reach eye level to pop them.
    2. Play flashlight tag with your child. Find a dark room and give your child a flashlight. Encourage them to try and “catch” your lights beam with their own by only using their eyes and not moving their head.
    3. Use a ruler or text viewer to highlight visual fields in which to focus on and to practice horizontal tracking.

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    • Wow. You just described my 8 year old son, who was also diagnosed with a mild case of Browns at the age of 3 or 4, to a “T”. We have never had any treatment recommended and as a result, have just kind of let nature take it’s course. I have pretty much ignored the Browns diagnosis because I don’t want him to use it as an excuse to put limitations on what he can accomplish in life. I don’t talk about it and I’m not even sure he knows he has it. All he knows is that he can do “crazy eyes” when he wants to and he thinks its funny. Maybe I’m just burying my head in the sand, but aside from a little lack of motivation and a hot temper, my son is growing into a very bright young man, who like your daughter, is one of the top readers in his class and in a gifted program at school. And more important to me, has lots of good friends that he loves to play with. So, I think we’re just going to go with the flow for now.

      My heart breaks for those I’ve heard from on this site who have had to deal with the more severe symptoms of Brown Syndrome and the effect it’s had on their lives and the lives of their children I pray that everyone can find some something that works for them and that all of these precious children can leave wonderful lives free from the effects of Brown’s Syndrome.

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  142. Pingback: Ask Little Four Eyes: looking for others with a child with Brown syndrome | Little Four Eyes·

  143. My 8 year old son has brown’s syndrome & he is scheduled for surgery next month. I am very nervous because the doctor is going to cut his top tendon I believe. My ? is are there any other ways to correct this besides cutting it? We are from Arkansas but his surgery is going to be at LeBonheur in Memphis done by Dr. Kerr. Has anyone heard of her? In desperate need of some advice.

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    • Debra, I’ve had some success with releasing adhesion’s in the head that seem to release patterns of stain in the head around the brain. Strains that can cause Brown’s Syndrome symptoms. I do this work with a very gentle light touch similar to CrainioSacral Therapy, it’s painless. I would be happy to talk with you about your child’s condition and whether my work might help. Surgery is not reversible. Felisa Holmberg, Certified Rolfer.

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  144. Hi, my son was just diagnosed today. He’s 4 years old and the doctor is not recommending surgery right now. I was just curious if anyone was recommended to do vision therapy and if that helps with this.

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    • We tried vision therapy for our son but didn’t have any luck. I know others have. My son has Brown’s in both eyes and sporadically complains that things “look dizzy” or that the room is tilting in different directions. Other than that he’s happy, active, and has had no trouble reading or interacting with other kids at school — you only see Brown’s when he’s looking up to one side or the other.

      I’m interested in whether or not there are any genetic connections with Brown’s and wonder if any other parents have considered surgery on kids with Brown’s in both eyes. Unless it gets worse we’re on a wait and see path, getting checkups every 6 months at the eye doc.

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    • Hi there,

      My daughter is now 9 and her Brown’s has actually gotten worse. Now it can cause severe pain that makes her throw up at times. Apparently, that is an incredibly rare occurrence and I will now need to find a specialist who understands, so if any of you amazing mamas have any suggestions, I would LOVE it!! ( The symptoms have gotten worse in this last year, though she has always had some pain.)

      Vision therapies always made her dizzy! I wish you the best of luck…….prayers for your family from Seattle.

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  145. Hi my daughter is 8 and was diagnosed with BS a few years ago after 3 misdiagnoses. It’s in her right eye and the surgical opinion is that the risks of surgery out way the benefits so we are not doing anything actively at the moment to help. We were told glasses and patch, exercises aren’t that helpful and her BS isn’t particularly noticeable unless she looks up.
    My little girl is keen to learn at school but is struggling academically with tired eyes and the occasional ‘sticking’ eye. Her reading is still poor and her writing and maths is pretty bad. She has also struggled with her hearing for the last few years but that has just come good.
    I would really appreciate any advice about schooling your child with BS. What has helped??? My daughter is currently seated in the middle of the back row in class and her reading vision is perfect if she tilts her head or her book. According to her sports teacher she is behind in gross mother skills and can’t track balls and is struggling in any sort of team sport. Her teacher says that she often comes up to her after she gives the whole class instructions and asks for individual instructions which is disruptive to the class. I am worried about my daughter’s self esteem despite socially doing ok, she has a sweet, gentle nature and seems to be quite lost in the classroom. I also don’t think the school ‘get it’. The school is a Steiner school and don’t use any technology so an iPad is out of the question. I have been doing extra work with her at home on my iPad though! Any advice on speaking to schools what has helped your children. Thinking of maybe home schooling her for a semester if need be but she would miss her friends terribly…new are in Melbourne, Australia.

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    • I am a parent of a child with a mild case of BS as described earlier in my post. I am also a special education teacher and behavior consultant (22 years and counting). Do you feel that all the difficulties that your daughter is having at school are attributed solely to BS? I understand difficulty with reading and ball games (i.e., tracking and eye fatigue) but listening and comprehending information also seem to be difficult for her based on your description.

      It may be helpful to conduct a comprehensive educational evaluation to rule out other potential factors which may be affecting her ability to learn and perform at school. Your daughter may qualify for the creation of an IEP. Should she require an iPad to help her learn you should be able to advocate for that assistive technology as part of her IEP.

      Please feel free to contact me with any questions. I hope this helps!

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      • Hi Verity! I’m an adult with BS. Sorry to hear that your daughter is having a hard time. 😦 For the reading, is it possible for her to get larger print materials perhaps? For whatever reason, while my vision is 20/20 when corrected with glasses I still find larger print MUCH easier to read. With small print I have a hard time keeping my eyes focused. Perhaps your daughter has noticed something like that too, or would if she tried it out. Could she try moving to the front of the class? I’ve noticed too that having to focus my eyes on something far away for a long time (i.e. a blackboard at the front of the class) is really hard for me and gets exhausting which makes it harder to have my eyes focus which just spirals. As for sports, I still have a terrible time tracking a ball. Is it possible for her to try out some other sports like running or anything that doesn’t involve a ball? I know that’s pretty tough to find though. I’ve always wanted to be able to play games/sports better than I can but I just can’t track a ball well at all!

        Best wishes to you and your daughter! I don’t know if any of this will be helpful, but I hope it will! I will add too that as she gets older, she will probably learn more and more how to accommodate, and will figure out what causes problems. I am able to live a perfectly normal life 🙂 Wish I had a more helpful answer! If you have any questions etc feel free to contact me! (viviellev[at]gmail.com)

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  146. So glad to have found this. My 5 year old son was just diagnosed with Browns. I’ve noticed since about 9 months old, but every doctor said he’s fine, nothing wrong. They didn’t listen or observe well apparently. Anyway, to those who are adults with this, how did it affect school work, as in ability to see the board and read from it? I’m worried for my son, as he seems very unfocused most of the time, but maybe it’s just because he literally can’t Fuchs his eyes.

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    • Hi Jessica,
      I’m an adult with Brown Syndrome! I’d say that your son may have a harder time focusing on the board, but that maybe sitting near the front would help? Does he complain about not being able to see well in school?

      As for how it’s affected me overall, see my much longer response to the comment above yours. In short, though I do get more fatigued by things that require a lot of visual focus, but I am able to live a normal life – I drive, I read, I have a graduate degree etc. As your son gets older he will figure out ways to accommodate, probably without even realizing it! (I know that I didn’t realize that I was doing little things to accommodate until I was an adult.)

      Hope this helps! If you want to ask more questions feel free to email me at viviellev[at]gmail.com. 🙂

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  147. Hi everyone. I have taken the time to read through many of these posts. My daughter at age 3 has been diagnosed with acquired Browns Syndrome, having shown no previous symptoms. I am wondering those of you who experienced acquired cases, as opposed to congenital, if you experienced and resolution/improvement? I am very worried 😦 We have seen top neuro opthamologists in Canada who are prescribing a wait and see approach, and to see if she will respond to anti-inflammatory medication. Thanks so much for your help!

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  148. Hi, my 9 year old daughter was diagnosed with acquired Brown’s Syndrome four months ago. It literally came on overnight and despite MRI scans and blood tests no cause has been found. She had a forceps birth but has never had any previous eye problems. With the agreement of her consultant we have decided to hold off treatment for now (steroid injection was suggested) as she would need to have a general anaesthetic and we don’t feel that it is bothering her enough to warrant the risks just yet when it may resolve on it’s own. We initially tried ibuprofen with no success. I’d be interested in hearing from other people with similar stories, whether resolved, treated, improved or still the same. We are in the UK.

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    • Hi we tried Naproxen for a bit which is similar to ibuprofen but did not see that it made a difference. We are also just monitoring for now. Has your daughters case changed at all? Is it noticeable?
      Wishing you and your family good luck!!

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  149. My daughter was diagnosed with Brown Syndrome in her right eye when she was 3. She is 12 now and has compensated nicely BUT she currently has a mild concussion and we just realized that when she closes her right eye, her concussion issues are almost non-existent. Anyone have experience with concussions – I am concerned about what exercises she should/should not be doing, cover the good or the bad or none. Please help!

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    • You can try to contact with Dr Heimo Steffen. My daughter was operated by him, in her eye . He is an excellent expert opthalmologist, specialised in strabism.

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