Your stories: intermittent exotropia and conflicting treatment options

· by · in strabismus (misaligned eyes), toddlers with glasses. ·

This story was sent in by Sheetal.  She’d love to hear from anyone else dealing with intermittent exotropia. – Ann Z

My daughter has intermittent extropia. Her eye drifts outwards intermittently. We discovered it when she was about 7 months, but doctor said not to do anything about it then. We started patching when she was about 1 1\2 years; we patched only one eye (right eye) to make the left eye stronger. We did it for about four months. We went for a follow up in November 2010; she was 2 years by then. Doctor said, he sees the drift and he says he will have to do surgery soon. He also told us that her vision is fine in both the eyes. (20\20)

I really panicked, because though I see the drift in her eyes, I don’t see it all the time and I see it occasionally, maybe 5-10 times a day and it is different on different days. Whenever the drift is there, it stays for few seconds and she corrects it. Drift usually comes when she is looking at certain angle, I don’t see it when she is looking straight at things. So I was completely shaken when doctor said surgery is the only option.

I subsequently took appointment from 2 other doctors.

The second doctor told me that the drift is about 20-25 prism units, but he suggested not to do anything, he is very experienced and he told me to wait, according to him 1\3 of the cases stays the same, 1\3 gets better on their own and 1\3 gets worse. So he told us to keep a watch and I have appointment with him in April. (He also advised is against patching because he of the binocular vision). He also mentioned an interesting fact, that small kids have to look up at everything because their height is small, but as they grow everything is at an eye level and that helps in getting the drift better.

 

We went to the third doctor and he also mentioned that the drift is about 20 prism units.

He knew my first doctor and he said, he didn’t agree with him as far as the surgery goes, he said surgery is the last option and he recommended to continue patching and suggested pencil pushup exercise.

 

Now, I am a little relieved that surgery is off for now but am confused that there are different statements from different doctors. Am not sure if whatever I am doing is right, fear of something going wrong is always there.

Now I am patching the right eye for 1 1\2 hours and left eye for 1\2 hour alternate days.

We also try doing the Pencil Pushup exercise with her, we got 100 sticks from dollar store and we stick stickers on the tip and move it from back to front, she does it or few minutes and then looses attention.

168 responses to “Your stories: intermittent exotropia and conflicting treatment options”

  1. Hi Sheetal.
    My little girl also has intermittent exotropia. We also discovered it around seven or eight months. However Paris is shortsighted in her eye that drifts occasionally and has perfect vision in the other. It is much better with her glasses on but not perfect all of the time. We see a top specialist and he is also very reluctant to attempt surgery at this stage. He said that it is a last resort. He also said unless it was present at least 50 per cent of the day or was obviously deteriorating then they would try everything else before surgery. He said the risks include over correction as well as the fact that with some vision therapy and age she may be able to correct it herself or at least 99 per cent of the time. We are doing patching a couple of hours per day and Paris wears her glasses also. She got her glasses at one and has been patching a couple of years. She is three. She does very well and it does not hinder her in any way. You are right about the patching and binocular vision though. It is a fine line becasue too much can interfere with binocular vision. Interestingly, my sister’s little girl is two and has exactly the same history as your little one. She has 20/20 vision and an intermittent drift of one eye, caught around seven months also. Her PO has said wait and see too. She is not patching yet. My sister said he did mention the possiblity of surgery though. We have been to three specialists also and luckily we have had the same opinion. We see our PO again next month so I will let you know what he says at that point. Don’t worry, whatever the outcome, you are obviously doing your absolute best for your little girl and the fact that you caught it so young is a great start. Let us know how she progresses. Cheers Ingrid.

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    • Hi Ingrid
      Thanks for your reply. Really good to hear from someone who is going thru the same situation. Hopefully we will be able to help each other with ideas that might work. I just hope things get better. There are some good days when I don’t see the drift and some bad days when drift is lot, am scared for now and I hope we are able to overcome this without surgery. I have also heard that lot of times consecutive surgeries are required after the first surgery. So I want to keep it that last resort. Its unfortunate that some doctors really scare you, the doc that I visit in NYC, is a great surgeon but he tells us with a blank face surgery is the only option, you can’t avoid it. I was so scared in November and then luckily I was able to have the second and third opinion which was against surgery. so far I don’t think there is any improvement, but again I am prepared that it will take time. Good luck to your little one and your sisters baby as well!
      Please keep in touch.

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      • Hello Sheetal. I know this is an old post – I’m not sure if you’ll be even monitoring this. But my 2 1/2 year old has intermittent exotropia. One eye goes off to the side about 30% of the time during the day. I’ve seen 3 doctors. Doc #1 had me coming to him every 4 months and after 9 months, didnt offer any solution. He never even told me about the patch. I’m the one who had to ask about it. His reaction was “I don’t believe they work but sure, if you want a prescription, try it. Doc #2’s treatment reco was to put the patch on 2 hrs/day on the “good eye”. Doc #3 treatment reco was to put the patch on 4-6 hours a day and ALTERNATE EYES (yes, patch even the good eye). I don’t know who to believe. Doc #2 also said that no matter what i do (patch or eeye exercises), SURGERY IS 100% INEVITABLE. Now, I”m wondering if I should see doctor #4. This is so frustrating.

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    • Hello Sheetal. I know this is an old post – I’m not sure if you’ll be even monitoring this. But my 2 1/2 year old has intermittent exotropia. One eye goes off to the side about 30% of the time during the day. I’ve seen 3 doctors. Doc #1 had me coming to him every 4 months and after 9 months, didnt offer any solution. He never even told me about the patch. I’m the one who had to ask about it. His reaction was “I don’t believe they work but sure, if you want a prescription, try it. Doc #2’s treatment reco was to put the patch on 2 hrs/day on the “good eye”. Doc #3 treatment reco was to put the patch on 4-6 hours a day and ALTERNATE EYES (yes, patch even the good eye). I don’t know who to believe. Doc #2 also said that no matter what i do (patch or eeye exercises), SURGERY IS 100% INEVITABLE. Now, I”m wondering if I should see doctor #4. This is so frustrating.

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      • Hi Stacey,
        How are your daughter’s eyes now? My daughter has the same condition, which I spotted when she was 2 months old, today she is 10 years old. Both her eyes continued to drift outwards up until end of last year.
        A doctor recommended surgery when she was 6 years old (first time I saw a professional for her eyes), but I refused.
        A year ago I started seeing an eye therapist once a week and after six months of exercises her eyes got better. She wear glasses now and for the last six months no squinting and no exercise 🙂
        Pinder

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    • Hello, i know this is a 10 year old post, but I would like to get some updates from all of you about your daughters intermittent exotropia. Did it get better? Did you do the surgery at the end? My daughter is 2 years old and it started when she was 21 months. She has also hypertrophic astigmatism and she is wearing glasses since she was 20 months. Her doctor and said we should wait and check her eyes every 4-6 months . I would really appreciate an update because i’m so sad and scared about this..

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      • My daughter had her surgery at 18 months and since then everything has been great. I don’t even notice any drifting in her eyes or at least that’s not what I focus on anymore. After the surgery, she would get her eyes checked out every 4 months, then it slowly went to 6 months until she didn’t need to see the specialist anymore. Now she goes to the regular optometrist for a yearly eye exam and gets her prescription glasses updated, but that’s it. I remember being so scared and nervous when she was diagnosed as a baby, but things have gone well for her thus far and I have no regrets.

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  2. There has been a lot of research done on the subject of intermittent exotropia and they found that if the eye drifts out only for distance and less than 50% of the time, there is no need to consider any treatment in the early years.

    A measurement of 20 to 25 prism diopters ( about 10 – 12 degrees) from centre should be possible to control and many children improve their control as they get older. The eye drifting is often linked with tiredness and worse in bright sunlight.

    There are usually no consequences to not actively trying to treat a distance intermittent exotropia alone. This condition on its own does not lead to amblyopia. Patching a young child who has equal vision and some binocular vision could make things worse.

    The second doctor you saw sounds like he has given the best advice. Intermittent exotropia is not one uniform condition. Each diagnosis is specific and the treatment depends on lots of factors. If the eye drifts out for near, this can require earlier intervention, such as convergence exercises or surgery.

    The long term outcome is good and if surgery is recommended this can be done at any age with good results. The important fact is to retain good binocular vision when the eyes are straight.

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    • Hello Hazel
      Thanks a lot for taking out time and replying.
      Your reply gives me confidence that she will get better. We are in a wait and watch situation. Although I am patching but have reduced the time and we give a break of one day in a week.
      Also, I feel push up exercises work, the days I miss the push up exercises I see the drift more than the days I do the exercises, so I feel they are working. another thing, now I try and get new stickers, she does not pay attention if the stickers are old. For new ones she really gets her eye inwards when we get the pictures are closer. So hopefully her eye muscles are working at that point.
      Another ophthalmologist quoted that she sometimes uses “finger puppets and sometimes I’d use my Iphone with a video cartoon playing on it for push ups. Anything she will pay attention to, ask questions about the targets that she has to look at them to answer”
      Hopefully that will work. I am mentioning this so that other parents might read it and follow if it helps their young ones.
      Thanks again Hazel.

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  3. Our 2-year-old daughter has alternating intermittent exotropia. I don’t remember exactly when we noticed it, but I took her in for a free infantSee check-up around one year. I mentioned it to the optometrist then and he said something like “some kids’ eyes still do that at this age. She’ll grow out of it.” Five or six months later someone else noticed it and mentioned it to me, so I called the optometrist and mentioned that she was still doing it and he still wasn’t concerned. SO we to her to a Pediatric Ophthalmologist. He said that she was nearsighted in both eyes and had astigmatism as well. He gave us three options: 1) patch the left eye for an hour a day (that one drifts out less frequently and sees a little better.) 2) put her in glasses and see if that helps her to control the drifting or 3) wait 6 months and see if it gets better/worse on its own.

    We decided to put her into glasses right away, since both my husband and his brother and their grandpa have the same condition. (Which I didn’t know until afterward.) The glasses seemed to help right away. She’d still drift sometimes, but not as often. However, shortly after her sister was born, it seemed to be getting worse. I took her back in to the PO and he said that yes, it was getting worse, but she was still seeing fine in her glasses, and there wasn’t really anything else to do except wait and see. When I asked about patching or vision therapy, he said that none of that would help with her specific condition. The only thing to do is wait and see if she can learn to control it. If she doesn’t, then it’ll get so bad that they’ll have to do surgery. He was getting less optimistic and thinking that they’d eventually have to do surgery, but isn’t in any hurry to do so.

    When we first took her in, they were drifting out 30 prism units, and only at distances. The last time we took her in (about 2 months ago) it was up to 40, and happening both near and far. My husband is more optimistic, though, since he and his brother and their grandpa never had to have surgery and can control it as long as their vision is corrected. He wants to put our daughter into contacts as soon as is practical, since he thinks she’ll see better and be able to control the drift more. As for me, I don’t know . . . it does seem that it’s getting a little better since the last time I took her in. Maybe it was just the stress of having a new baby sister and now that she’s used to that, she’s doing better. Our next check-up isn’t until June or July. I’m planning to have the baby’s eyes checked at that time as well. I haven’t noticed anything with her yet, but she’s just 4 months old right now.

    Mabye that’s too much information, but that’s our experience so far.

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    • Hi Stephanie
      Thanks for your reply.
      Looks like our kids are of the same age and has same conditions. Although, all the three doctors that we went to have not advised glasses. I am lot hopeful when I read that your family history had the same problem but they were able to overcome it by age!! That’s great news for me! so I think we need to just work with the kid to have her help control the muscles, maybe things like therapy.
      I posted a reply above to hazel, please read that. Those are the things that we are doing for now. I will keep you posted about out next visit and if you hear of any update or anything we can also do, please please share it with us.
      Thanks again and good luck for your daughter.
      Sheetal

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  4. I have been dealing with PO doctors for about 2 and 1/2 years and have had the same sort of experience. I too got a few different opinions and it seemed to make things worse as far as knowing what to do for my son with constant exotropia. There doesnt seem to be a set standard protocol that is used and in fact sometimes the protocols differ completely! My advice is to do a lot of research on your own and take into account the POs opinions and experiences and ask lots of questions until you are comfortable with the plan of care for your child. Best of luck.

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    • Hi Darlene
      Yes, I agree. For me it was extremely frustrating to hear different opinions from different doctors. As you can see we have gone to three different docs and all have given different opinions, First and last doctors were extreme where one says surgery and the other one says “leave it alone”. For now I found the 2nd doctor to be a little balanced where he does not recommend surgery and at the same time he says “continue with therapy” he specifically said, do something, whatever works.
      That’s what we are doing. Let’s see,
      Good luck for your Son. I hope he feels better.
      Thanks
      Sheetal

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  5. Sounds like you are trying to be the best parent you can be! Your little one is one lucky kid to have you in her life. I was thinking about how hard it would be to get conflicting advice. It is my understanding (as a parent) that different treatments do exist and part of the treatment is a science and the other part art – as in doctors take into consideration each individual child’s situation, personality and previous reactions to treatments. Some questions I thought of are…
    Are all 3 doctors pediatric opthamologists?
    What does your mom gut think?
    How did your regular PO react to the news of your 2nd and 3rd opinion?
    Is there a posibility of a 4th?

    I know it is probably not helpful, but thought I would share.

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    • Hi “Amomofelly”
      Thanks for your reply.
      Yes, all three doctors are pediatric ophthalmologists; first one is mainly a surgeon, though the other two doctors also do surgeries.
      For now, we don’t have an appointment with the first PO, so we haven’t really communicated with him that we have visited the other two doctors.
      Yes, we have a 4th appointment, and this is in March, I guess after that we’ll decide which doc to continue with.
      Since I am getting conflicting advice, I am reaching out to parents and friends who might have experienced same situation to guide me what to do.
      I just want my little one to be alright very soon
      Thanks again
      Sheetal.

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  6. Hi Ingrid
    Thanks for your reply. Really good to hear from someone who is going thru the same situation. Hopefully we will be able to help each other with ideas that might work. I just hope things get better. There are some good days when I don’t see the drift and some bad days when drift is lot, am scared for now and I hope we are able to overcome this without surgery. I have also heard that lot of times consecutive surgeries are required after the first surgery. So I want to keep it that last resort. Its unfortunate that some doctors really scare you, the doc that I visit in NYC, is a great surgeon but he tells us with a blank face surgery is the only option, you can’t avoid it. I was so scared in November and then luckily I was able to have the second and third opinion which was against surgery. so far I don’t think there is any improvement, but again I am prepared that it will take time. Good luck to your little one and your sisters baby as well!
    Please keep in touch.

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    • Sheetal,
      I just read this post saying that you come to NYC to visit an eye doctor. I went to one weeks ago and he too said surgery is the only option. Was it Dr Brian Campolattaro by any chance? Those words are so hard to hear, aren’t they? I’m really hoping my kid doesnt need surgery.

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      • Stacey,
        You can read many of my posts above to see my daughter’s journey. She had onset a bit after age 2 and is now nearly 6. She is doing great! Most days her eyes stay straight, and I don’t even think about it much anymore. We did patching and vision therapy and were told we’d try minus lense glasses if things got worse (they didn’t). In our journey, we saw two pediatric opthalmologists and two developmental optometrists – everyone was aligned on a conservative approach, but one doctor told me that there is not a lot of consensus in the medical community on how to treat exotropia. He said many doctors on the east coast would do surgery right away (we are on the west coast). In my own research, I also found that there isn’t much known about the natural course of exotropia – what happens when it’s not treated? There was a Mayo clinic study starting a few years ago comparing no treatment to patching, but it will probably be many more years before we know the results. Anyway, I guess the point is that the doctors don’t agree because there is not significant evidence supporting one treatment over another, so you just have to do what feels right for you. Good luck.

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        • Hi everyone – I posted in here about 2 or 3 years ago- my son is now 9- he has intermittent exotropia and I saw several doctors as well. The big eye clinics seemed to say surgery must be done soon- but then I went to another experienced doctor by a friends recommendation and he did not recommend surgery. My sons exotropia is still there but now that he is older, if I say hey your off, he will fix it. He did end up getting glasses for nearsighted last year- but it’s literally the same- I only notice it when his vision is obstructed by something like a glare on window or sometimes when he is on computer but if I say something he fixes it – I don’t for see us having surgery unless it drastically changes. We used to go to the doctor every 4 months and this last checkup two weeks ago the doctor said, see you next year! I glad I went and got different recommendations – surgery can be iffy…unless his eye was off alot and he was losing vision then I would have done it/ but right now- I think monitoring and watching to make sure it doesn’t drastically get worse is the way to go for us. We are in michigan. 🙂 I agree with other writers that there isn’t much known about why this happens but some kids can gain control of it as they get older.

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  7. Hi all,
    I just wanted to post some good news! Paris had her appointment with the orthoptist yesterday and she has achieved pretty close to 20/20 vision in her short sighted eye (with glasses on of course) but it was such great news. The drift is also looking better and it was all round good and positive news. We see the PO in another three months and we will get the verdict then as to whether there has been any change in the script, hopefully not. She did say that myopia does tend to get a little worse as children grow as they eye gets bigger however she said Paris can wear a contact in that eye from around six or seven and laser surgery is a definite option when the eye is fully grown. So lots of options and we left the office feeling very pleased indeed. The hard work definitely pays off!! The orthoptist said the patching is really only a maintenance thing now and we have to continue the three hours per day, which is really not that bad and it does really become as routine as brushing your teeth. We don’t even really think about it any more and Paris is great with it. I think she is good with it as her eye is seeing so well now. Thank goodness 🙂

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  8. Thanks Ann. I will admit I do get very nervous before our appointments, as I am sure many parents do, so it is such a relief when things are looking up! It’s also great to see that all the effort is actually making a difference. It’s easy to start to wonder if the day in day out patching is helping. The orthoptist said she is about one line away from 20/20 and she seemed to think that might be pretty close to as good as she will get in that eye. I am happy with that though, considering that when we first started going she was only seeing the big E on the eye chart with that eye. Thanks again for your kind words.

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  9. Hello…my little girl was recently diagnosed with intermittent exotropia. We noticed her eye drift late at night on a few occasions and decided to have her checked out. We were concerned that this was due to her traumatic birth. She is otherwise healthy and adorable. Initially, the doctor recommended surgery even though this occurred infrequently. I read alot about surgery possibly leading to overcorrection and am scared to death about making the wrong decision. After the doctor explained that she does have binocular vision and perfect sight for both near and far…I asked if we could just continue to monitor her until things changed. She agreed. As long as their brain is trained to perceive 3d….there is no emergency! Surgery would be just as corrective at 20 years old …as long as their brains are developing properly now. ALSO…I did the same exam to myself with a video camera and found that I have THE SAME issue. I am nearly 40 and never even noticed. Who knows how many people have this and don’t even know! I DO REQUIRE A LIGHT PRESCIPTION FOR DISTANCE and have an astigmatism. No one caught this. I am choosing to monitor her and not make a big deal of this to save her from psychological trauma this may cause. The patching seemed to bring it out more in the eye hat was covered, so I.may even stop that and just wait and see. Hope that helps someone. Test yourselves when you get a chance…you might learn something new!!!

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    • Hi Mary, Yes, I strongly feel that we should leave it alone unless it is becoming worse. I have spoken to lot of people and most of them have corrected it themselves without any medical intervention. My doctor had scared me so much, i had sleepless nights for couple of months.
      All i can say is , keep a watch and if anything needs to be done, it can be done at any age with same results.
      Good Luck!

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  10. Hello, all my son has intermittent exotropia since a young age (1 years) and we have had his eyes checked for nearly 5 years now. His eye goes out alot during teh day but his vision is fine and as long as this remains like this until he is 6/7 his brain will programme the eyes and moving of the eyes out will be purely cosmetic. I have the condition myself and can control the eye moving out and hope my son will as well. My advise is dont worry about how it looks to other people, most people think if teh eye goes out the child has sight issues and the parent is not doing anything about it ie glasses. You know what facts and that is all that matters !!! loving your child is the most important thing…..forget was people think or see !!! I will keep you updated !!!

    Jay

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  11. Hello, my little girl will be 2 yrs. old next month and she also has intermittent exotropia. She’s had it since she was born. We thought she would grow out of it, but didn’t notice any improvements for awhile. So we took her to the dr. and he recommmeded patching to see if things improved. He seemed perplexed with her condition so I went to get another opinion. This new dr. monitored my daughter’s condition for 6 months. She said her condition hasn’t improved. She is also near sighted and has to wear glasses. She suggested surgery as well. I waited another 4 months just to see if anything changed. Today was her check-up and the dr. said that she didn’t see my daughter use her right eye at all. She would only use it if the left eye were covered otherwise, she was only using her left eye. So the dr. said my daughter needed surgery as soon as possible b/c her binocular vision will get worse if she doesn’t. I’m scared to death about surgery, but I don’t think I have any other options. I want the best for my daughter. I’m hoping that I make the right decision.

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  12. Hi Lilly
    You mentioned that during your last checkup doctor mentioned that your daugher was not using her right eye at all. So, is this something that you noticed as well ? or was this something that only doctor pointed out?
    Which City\State are you in US? I can give you few referrals in NY\NJ if you like. But if the binocular vision is affected then maybe surgery would be required. I would still suggest you visit a ophthalmologist rather than a surgeon and then go for a final decision. sometimes, if you visit a surgeon directly , they do not believe in therapy and hence the conclusion. Good Luck.

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    • Hi Sheetal,
      I’ve noticed that her right eye drifts most of the time, about 80%. Her left eye drifts maybe 20%. The doctor is a ped. opthalmologist and she is also a surgeon. According to her, my daughter’s eyes have not improved since the last visit and she is very concerned about her binocular vision. She is actually the third doctor that I have visited and she seems to be the most knowledgeable. The other doctors have also suggested that inevitably my daughter would need surgery. I live in Houston, Tx so I believe there are some very good doctors here b/c of our large medical center. I’m trying to go with my gut feeling, but I’m really nervous & scared. I’m just hoping for the best. Thank you for your suggestions.

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  13. Hi all, just my opinion but I think with intermittent exotropia it is definitely worth waiting to see if the child gains control of the eyes themselves as they get older, particularly if the drift is not large and not all the time. Surgery can often come with it’s own risks as well such as over correction. As long as it is intermittent the surgery can be done at any stage as the child is still using their eyes together some of the time. My daughter has exotropia due to one short sighted eye and one normal. She has now equal vision in that eye thanks to patching for two years as I mentioned. So we have dropped back on the patching to two hours per day from three and will stop it soon to see if it holds. I am still not entirely happy with the amount of times I can see her eye drift but I am not too worried as I know that if she does need a surgical alignment it can be done at a later stage, she is still only three. I would just be careful about rushing into surgery before you absolutely have tried everything else possible.

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  14. Hi all,

    Our 3 yr-old has been diagnosed with intermittent exotropia and we’ve been confused about everything we’re reading online. This thread has definitely been useful!

    I was wondering how one goes about finding specialists to get second opinions from? We have seen only one PO (recommended by our pediatrician) and there are a few more that i can dig up from my health insurance site (aetna). But how exactly does one find the experts in the field? I’m in Nor. Cal in case any one has recommendations.

    Thanks!

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    • That’s a great question about finding experts, we were lucky to really like the PO that our pediatrician recommended to us. You might just ask the PO that you saw who they would recommend for a second opinion. Or you might see if any research universities (that have schools of ophthalmology) or children’s hospitals near you have recommendations. I’d love to hear other thoughts on finding experts, too.

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  15. Sheetal,

    Hi my name is K-U (Patel). My daughter, Simryn, is a little over 3 years old and she was diagnosed with Intermittent Exotropia at basically 1 year old. In the beginnning, it was definitely very intermittent in both eyes (more so in the left than the right) .. we live in NJ and are very lucky/fortunate to be seen by Childerens Hospital of Philadelphia Pediatric Optomology (Dr. Mills). We have had times where it seems like it was getting worse (which the Dr. confirmed) so he recommended patching her stronger eye (right) for 1 hour a day. We did that for a month and definitely felt like the drifting was not getting worse. So the Dr. told us to stop patching to see if the improvement was sustainable … unfortunately .. it wasnt so we are now back to patching her right eye for 1 hour again and will see Dr. Mills in Septemeber. We have talked to the Dr about surgery but at this point .. we are looking to see how the patching goes .. our struggle is balancing not doing surgery versus trying to get this under control before she starts Kindergarten …

    Would love to hear from anyone who has gone through the surgery and their experience/results …

    Thanks ..
    K-U
    Kupatel70@gmail.com

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    • Hi K-U and Sheetal,

      I am in a similar position as you guys. My son has been seeing an ophthalmologist starting at 7 months for exotropia (mainly in the left eye). He is now 12 months old. It shows mainly when he is looking up at a farther distance. The two pediatric opthalmologists we’ve seen are saying he needs to have surgery, and it’s crucial that he gets it before 2 years old, so that he develops 3D vision. However, during all of his check ups, they always say his vision is good. And I also notice that he sees things really far away, as he would do such things as point and laugh at it. I am just really hesitant to put him under surgery, when everything else seems to indicate his vision is developing fine, and my mind is constantly questioning whether the exotropia is mostly a cosmetic issue. But these opthalmologists are making me feel really guilty or unintelligent about opposing the surgery. Also, I would feel better about at least waiting until my son was older for this surgery, instead of having this time pressure.

      Does anyone have any experiences where their child was told to get surgery for exotropia before 2 years old, but chose not to get surgery, and their child’s 3D vision still developed normally? I would really appreciate the feedback. Thank you.

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  16. My son is a year old and was diagnosed with intermittent extrophia two months ago. I started noticing it around 6 months old…but thought maybe it was just his eyes learning to adjust in early infancy. At first, my husband and I were the only ones that noticed it. We are just watching and waiting now, but it drives me crazy. I obsess over the eye. It only drifts when looking up or at a distance, and some days it seems like it happens a ton and then other days I hardly notice it. My son has several other birth defects totally unrelated to the eye. We have already been through 4 surgeries, so another doesn’t really make me panic. I just want it to get fixed so I don’t have to worry anymore. I just don’t want him to be more of a target at school when he is older because of his eye. I would also love to hear from someone who has gone thru surgery and gotten good results.

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  17. Hi Carrie,
    I feel your frustrations! Our little one has intermittent exo also. Like you, some days it seems fantastic and other days I notice it more. Also same thing with our little one, drifts when looking up more or at a distance. Paris is short sighted in that eye that drifts – have you had your son’s eyes tested? If it is a vision issue, glasses will more than likely keep the eye straight once it is seeing correctly. Just a suggestion to check out as it sounds so like our little girl. She is three and was diagnosed at one. I started noticing it around six months as well.

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  18. My 2 yr. old daughter just had her surgery 2 weeks ago. She had intermittent exotropia in both eyes. Her right eye being worst than her left. She also wears glasses. You can see her history in an ealier posting (June 21). As for her surgery, it went really well. She was done in just under an hour. She recovered quickly, back to her usual self in a day. She just had her follow up with her opthamoligist and both her eyes are aligned now. Her eyes look great. She looks different now that both eyes are straight. Before surgery, 80% of the time either one of her eyes would drift. It’s still early, but according to her doctor, if she’s able to maintain balance in both of her eyes, she may not need her glasses in the near future. So all in all, surgery has been successful and I am very pleased & relieved.

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    • I´m so scared, I live in Portugal and I´ve been reading about this for a long time. My daughter has been going to Pediatric Optomology appointments since she was 6 months old and patching since 1 year of age. She´s almost 5 now and has been patching everyday for 2 hours only her left eye because she has more exo on the right eye. But she only does it when she´s tired,or not focusing on anything or with sunlight. Her doctor said on the last appointment that she´s going to need surgery next month. But I´m scared that she may become cross-eyed., because on a regular basis she has aligned eyes. What should I do ? It´s been 5 years and no improvement and has become worst because now she does it most of the times with both eyes.

      Like

    • Hi I am happy that her daughter has recovered so quickly from the operation and above all it was a successful surgery, my daughter at 8 months of age with the right eye began to take water saw her this more or less as your beautiful daughter in the photos, and take it to MO. He say with a patch she can get better, I have the new appointment in the month of September. but now I notice the same thing in the right eye too, always have one fear of being in the right hands of DO. I live in the Valley of Texas, I want to find the best MO near here, although one always has many questions

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  19. Hi Lilly, What wonderful news. So happy for you. Would you be able to post some pics? I would love to see the before and after of surgery?

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      • Hi Lilly, there isn’t a good way for commenters to post pictures, though you could post a link to the picture if it was somewhere else on the web. Otherwise, you can email me (ann@shinypebble.com) the picture and I can post it.

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      • Thank you Tandy! I hope all goes well with your daughter’s appt. I know that every child is different so surgery is not always the answer, but so far we have been very fortunate that my daughter is doing well.

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  22. Hi Lily
    Thats great news. another suggestion I would give is, to follow it up with therapy. I have heard that even after surgery it may come back. But if you follow it up with therapy, the Brain and eye co-ordination gets stronger and thats what we want.

    Good luck to all little angles.
    Sheetal

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    • Thank you Sheetal!
      Yes, I have also been told that there is a tendency for it to come back. Her doctor actually told me that she may need another surgery in the future and if she’s lucky maybe it won’t be until another 10 years. Regardless of what happens, I’ve decided not to have anymore surgery until she is old enough to tell me what is going with her eyes. Although her surgery has been successful thus far and she recovered quickly, I would rather not put her through that again.

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        • Hi Cassie

          My daughter is doing really well. Since her surgery she has been to the opthamologist twice. Although the Dr. has said that there is still some drifting in her eyes (maybe 5% of the time), I hardly notice it unless I’m looking for it. I don’t regret getting surgery for her at all. Before surgery my obsession with her eyes took away precious time that I could be enjoying with my daughter’s. Now I don’t obsess over it anymore and I am a lot less stressed about it. I know that this is not something that will just go away and I will eventually have to deal with it again in the future, but right now I’m just enjoying my daughter. I will continue to have her eyes monitored and just see how it goes from there.
          I don’t mind answering any other questions that you may have. ?3Best of luck to you.

          Like

      • (sorry it would not let me reply to your post below)
        Thank you for your reply, and I am so glad to hear it is all still going so well. I am also developing an obsession with my little girls’ eyes and like you, am finding it detracts from my just enjoying her for who she is. I am hoping this will fade once the initial shock of it all starts to fade. I constantly find myself checking her eye alignment rather than enjoying the eye contact and feel horrible.

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  23. That is an unbelievable result Lilly. Wow, you must be so pleased. She is beautiful. Yes, I can imagine it must a difficult thing to go through for the child and parent.

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  25. My daughter was diagnosed with intermittent exotropia with an upturn in both eyes at about 18mos. After what felt like redundant and useless patching as well as second opinions from other Pediatric Optomologist specialists, we decided to give her the surgery for the upturn when she turned 3. Both doctors we consulted expressed an urgency for the surgery, so that her brain would be able to compensate for the surgery changes. The doctor informed me that she would never have normal 3D vision, and the surgery may end up being mostly cosmetic. The upturn is gone, but step 2 for the exotropia is coming up this Summer (she will be turning 6). The other POSpecialist warned us that the doctor we used for the surgery would probably operate on the upturn before the outurn, but that he would have done it the opposite way. Talk about confusing, I have always been concerned that we might have done this surgery in the wrong order. I am still so uncomfortable with the way her eyes look and find that they are especially bad at times when she is sick or tired. She is so beautiful and this problem just urks me to no end. I have a friend that had this issue with her daughter and never gave her surgery for it – and she thinks she has ‘outgrown it’. I wonder if I am too late to let her ‘out grow’ this now and if I should continue down this surgery journey. It was so stressfull putting her under and then keeping her on lock down in the house with no baths for 2 weeks (freaking out about getting cat hair or dust/dirt near her eye to avoid infection). Any advice about Surgery or ‘outgrowing it’ would be of super help. Now I am reading about how she will most likely be nearsighted by age 20 and that many children with this end up with mental issues. My husband thinks I should stop reading stuff on the internet 🙂

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    • Hi Sue, how is your daughter doing now? How effective were the surgeries? Was her binocular vision restored? My nine month old daughter was recently diagnosed with intermittent exotropia and we are terribly confused if and when to get the surgery done. Its already quite severe and progressing.

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  26. Hi- My daugther had esotropia- (eye turns in) we had the surgery at 2 years old- we also did vision therapy for a few years after- her eyes were good but now she is 10 and now she developed exotropia- (eye turns out). We have been doing vision therapy, and acupunture for 5-months and have not had sucess. We are looking for a top notch surgeon- can anyone give me the name of a great surgeon in the Washington DC area or NY City area it would be much appreciated-Thanks Val

    Like

    • Hi , i visited Dr Brian Campolattaro , Pediatric Ophthalmology Of Ny
      Phone: (212) 684-3980 , Address: 30 E 40Th St # 405
      I was not too sure of him but i have a friend that swears by him. Check him out.

      Like

    • Do you think the exotropia is a result of the earlier surgery? I am not saying it was, just curious because my 11 week old has alternating exotropia and they have already brought up surgery.

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  27. Hi,

    I thought I’d share my two cents since there are some recent posts about this… I’ll try to tell you the best I remember it, but since I was kind of young at the time, my parents remember it with more detail than I do.

    I have alternating intermittent exotropia that was diagnosed when I was around 9 or so by a specialist who I have been seeing as my regular eye doctor ever since (I’m in my early 20s). There were basically two options- surgery followed by therapy, or therapy alone. My parents didn’t want to put me through surgery, especially at such a young age (the downside is that insurance covered therapy ONLY as a followup to surgery, but not standalone). The office said I could try the therapy alone, and if it didn’t work, then we could try surgery. I spent my Saturday mornings that year going through vision therapy at that eye doctor’s office with home reinforcement- it was a bit of a challenge, and often I was shy about being supervised by my parents/being put on the spot, but the therapy worked. I graduated from therapy and haven’t needed to go back for any further therapy (although lots of college reading/difficulties focusing on reading is making me question that lately… that’s how I ended up stumbling onto this page, actually), but I still go and see her for routine eye appointments and new prescriptions- I don’t want to see anyone else because I have such a long history with her and she knows me well. I plan on going to see her during my next break and seeing what’s up.

    By the way, I have had glasses since I was about 6 or 7 for nearsightedness, and when I was 9 (I’m going to guess my first prescription with my specialist) I started wearing bifocals to help improve my focus with reading, as well as astigmatism and exotropia, and I’ve had bifocals ever since. Glasses have thus been part of most of my life, and were already part of my life regardless of the exotropia, so I couldn’t see myself ever going without them (literally :P).

    I thought I’d share my story as someone who has been through it. Therapy alone can work- I won’t speak for everyone though. I am glad I had the therapy, and glad I did therapy first before surgery. I’ve never had eye surgery.

    Hope I could help someone out with some first-hand insight. 🙂

    Like

    • Hi Bridget..

      may i know whether you eyes become normal after the therapy that you have went through? Or you still have that problem – intermittent squint? How about your study all these years? my son age 10 mths got the same problem.

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      • Hi ani,

        At the time of my last post I was in grad school for a master’s degree and I think I must have been on this site looking for some solace because the workload added a lot of stain to my eyes at the time and I was overall not eating and sleeping well due to the workload. I was in a pretty dark place with grad school for a while and at some point later that year I came across this site and your post and knew my response would be a bit tainted by how my life was at the time, so I decided to wait until I was in a better place to respond.

        But all these years I had on my mental to-do list to respond to you and so I went on a search for this page and managed to find it. I think the additional time has allowed me a better understanding of my abilities and weaknesses and context. I’m glad to say that I have long since moved on from the grad school years that gave me turmoil and am now gainfully employed in a professional job I like that has nothing to do with either my bachelor’s or master’s degrees. 😉

        Therapy definitely helped me but I think it’s difficult for me to say that it can fully correct a body’s natural exotropic tendency and go fully back to normal. Just as dental retainers are constantly needed in order to preserve orthodontic work else teeth will go right back to where they started, the complicated prescription I have helps to counter my eyes’ natural tendencies, to help preserve the vision therapy I had. At least that’s how I see it, but I’m not an optical professional.

        While I don’t have heavy exotropic moments like I used to as a child, my partner has observed very rare blips where one eye will deviate but I naturally snap it back. When I was a kid I didn’t even know what to do. Blink a few times and maybe that will help? When I’m overdue for sleep he’ll catch me blinking rapidly to try and refresh my eyes. If he gets really close to my face, sometimes my focus gets messed up and I start blinking rapidly to try and reset how he should look.

        When I leave a building on a sunny day my right eye often winks shut to compensate until I can adjust to the light. My transition lenses don’t get dark enough quickly enough, it seems. Maybe unrelated, but that eye now also has an eyelid that will kind of fall a little when I’m fatigued, which started in grad school when I was only sleeping from 6-9am and 6-9pm for several months (around when I made that first post)- would not recommend.

        Reading books for me has ALWAYS been a chore. I find myself glazing on the same lines over and over, realizing I’m struggling to actually bring the words into my head let alone then mentally process their meaning. My eyes quickly get fatigued while reading books and then I want to take a nap. I found myself counting the thickness of reading assignments or quantity of pages to have to slog through- reading became associated with obligation and work and therefore I haven’t picked up a book for “leisure” in a very long time. This may indirectly be a reason why I gravitated towards math and science in school. As a result I lucked out in that my math and science classes didn’t have anywhere near the same kind of reading load that many disciplines in the humanities and social sciences do.

        I learned more recently that I actually find it easier to read things on the computer such as articles and websites- my eyes don’t treat it as the same kind of chore that physical book reading has become associated with. With websites you can scroll and keep the text at roughly the same position with respect to your eyes, books you cannot. Of course if you try to search for information, you will see everyone talking about how books are better for retention than screens, but they’re clearly written for the people without these vision hurdles who have the choice between print and digital without a disability impacting it. Even if digitally reading isn’t quite as good for retention as print reading, isn’t it still better than not reading at all?

        I had a part-time job a few years ago converting academic content into assistive technological formats for students with various disabilities who were registered with the accessible education office. Some students had scanned book material converted into text that they could feed into a text-to-speech reader or that they could modify such as changing the font style (such as into a dyslexic-friendly font) or size for easier reading. Some students just had PDFs so they could zoom in to enlarge the text on their monitor. Maybe that was the kind of accommodation I needed, although PDFs weren’t as mainstream/widespread until around college. Would it have helped me to scan all of my readings from my physical books into PDFs and then read them digitally, so as to not be overwhelmed by the physicality of the book itself, of holding the book open, stopping to turn the pages, constantly resetting my eye position?

        When I was seeing my specialist and going through vision therapy, I had the option to get a note to file with school in order to get accommodations such as extended testing time. I think 9-year-old me must have already worried that I would be treated negatively or differently by peers for such a thing and so I didn’t ever get accommodations. I worked hard to be on the same level and blend in with everyone else. So in that case I passed as normal, and I don’t think I could have done that without vision therapy. I was still an A/B student for most classes. I suppose if I just wasn’t able to finish tests fast enough due to my vision problems, and my grades were being significantly impacted, maybe I would have needed accommodation letters, but I was able to push through and do well enough most of the time. Maybe if I had gotten accommodations, my test results in Reading and English classes would have improved, particularly with standardized tests.

        Even in grad school, much of my main difficulties were not in the classes I took but in the thesis portion of it, where I struggled to put in the kind of reading they wanted from me in order to write a thorough literature review on the topic. It took me an extra year to finish my master’s due to some heavy procrastination and other issues at play. My heart wasn’t in it anymore, so any reading I had to do felt even more like a chore that I didn’t want to do.

        Also please be sympathetic if your son’s vision issues extend to gym class and sports. Gym class was one my least favorites partially because of my vision problems which gave me poor depth perception and caused me to get hit a few times by balls flying at me and I got in the habit of always trying to avoid balls flying at me as a result. Trying to avoid everything flying at you does not make one a good teammate, and gets one subjected to being picked last and ridiculed for not caring enough, etc. My motto: “It’s just a game! Don’t take it so seriously.” I wish phys ed/gym class was more about building lifelong personal fitness skills and less about how well your innate ability can or can’t keep up with sports…

        So for the most part I have been able to live a relatively normal life but some of my issues – eye teaming, eye focusing, visual fatigue, sensitivity to light – may still resurface if I do things that set them off.

        Since it took me so long to get back to you (sorry about that!), your son is now almost the age I was when I was diagnosed. Hopefully he has been treated throughout the years and maybe as a result he will have an even easier time of things than I did. I think the earlier therapy can be started the better. I know it’s a super long shot that you’ll end up seeing this, but I hope that your son will be able to overcome the setbacks from it enough to live a relatively normal life. 🙂

        Like

  28. Hi all,

    My daughter (2 years, 5 months) was just diagnosed with intermittent exotropia at distance in both eyes. She otherwise has great vision and doesn’t need glasses.

    I am really struggling with accepting her condition, so I was hoping for some positive outcomes and tips from this forum.

    It seems like every day I see her eyes drift more and more, and it’s hard not to break down and cry. I’m so worried for her future.

    Her PO prescribed 1 hour/day of alternate patching and a follow up in 6 weeks. He said the next step could be glasses for near-sightedness just to force her to exercise her eyes. He mentioned the possibility of surgery after she is 9 years old, but said it would likely only be for cosmetic reasons.

    She is a very enthusiastic and active girl, but her mood changes when her eyes are drifting…like it bothers her a lot. Did anyone else notice this when their kid first had symptoms? Does it get better? She seems especially bothered by sunlight, but I don’t want her to lose her love of being outside!

    Also, I noticed some people mention pencil pushing exercises and vision therapy? What is this and how do we do this at home? I feel like I need to start doing everything possible to help her get over this! I want her to have control of what her eyes do.

    Any advice and happy stories appreciated. Trying not to be devastated, but it’s a battle… 😦

    Thanks.

    Like

    • Crystal, I will be going soon for vision therapy and will update you in about 3 weeks. I told my doctor that I dont want to go for surgery and he said, how would you feel if in history it would say that the child could not look straight because mom was against surgery. I keep thinking about his words , its a struggle but lets see. My only question is , i feel her eyes are better than when it was first diagonsed, which is about 2 years . So, is it not a possibility that they will train themselves ?

      Like

      • Hi sheetal,

        Any update on the vision therapy? My daughter seems to have improved control with the patching, but I know it’s still early…

        I plan to get some second opinions in terms of treatment as I want to make sure she has the best outcome possible. I’d love to hear what’s involved with the vision therapy and if you’ve noticed any changes.

        Thanks!

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  29. My daughter also has been diagnosed with intermittent exotropia. Like you I only notice it at certain times. When she is tired or restless is when we really notice it. My heart sunk when the ophthalmologist said possible surgery to fix it. Her pediatrician said he thought it would correct itself as she got older and not to worry about it. Now that I have no insurance and not a way to get her back in to see the ophthalmologist, I am getting a little more panicky. Some days it’s really noticeable and other days not so much. I don’t know what to do at this point. She turns 2 next month and we noticed it at about 7 months old. I feel better knowing there are other parents out there who have children with this. I am dreading her having surgery. I don’t know what it entails and my older daughter had a clogged tear duct. I flipped out on the doctor when they tried to fix it in the office, which didn’t last long (17 years ago), and when she went in for surgery at the hospital, it was a different and calm ordeal. I don’t want her to have have this surgery. So is there a way to get this to fix itself? I am sorry if this is rambling, I’m a little freaked out about it.

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  30. So relieved to find this thread. I am very new to this condition. My daughter is 11 weeks and based on what a Dr. Romero (Ped. Opthamplogist) in Hou, TX says she has good vision with alternating exotropia. He basically said expect surgery at 6 mos. He told me to patch all day alternating eyes and resting every third day. I did not care for his style much. I have three other kids and my family has always seen one gen family practitioner. The PO told me my baby has defects and should be seeing a pediatrician not a fam prac. He also said she had retracted eyelids which could mean thyroid or nuerological probs, to have her thyroid tested and if that was negative we need a brain scan! WOW! My daughter is a really healthy full term baby with tons of personality and all the normal sweet baby traits and habits. She does have an occasional quick “startled look” but only at, I would call, appropriate times. If awoken by noise, light changes etc. he was holding her out from him and turning around to follow her movement, putting objects up to her eye, turning lights on and off etc. That just seemed extreme to me. Has anyone else heard of this? Anyway, I took her to another pediatrician to confirm that my family doctor had not dropped the ball. I also have another appt. with a different Opthamologist next week. – Dr. Lai. Does anyone have any other physician referrals for PO or vision therapists in Houston? Also, someone mentioned mental issues as a result of this. Is that because of a stigma or bullying as a result? Help!

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  31. Hi Gina, I have just stumbled across this too as I’ve been told my 16week old has intermittent exotropia too. The paediatric opthamologist I saw today said 1/3 get better on their own, 1/3 stay the same and don’t require treatment, and 1/3 need surgery. He said since she’s had it basically since birth, and that it appears to be getting worse, not better, he has doubts that it will resolve itself, and surgery is on the cards for us too. But looking online after getting home, it seems that surgery is not recommended on babies so young, and that some professionals recommend therapy over surgery. In your situation a second opinion sounds like a good idea. How did you get on with the other opthamologist? My daughter also often has the ‘startled look’ you mention and I’ve been told one eyelid droops more than the other, but have not been told anything about birth defects or mental issues. Hopefully the other doctor was able to answer some of these questions for you, and I’d be interested in the responses you got if you’d like to share?

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  32. My daughter has Intermittent Exotropia. She is now almost 8 years old. We noticed it when she was a baby and she’s had countless appointments since then with specialists. We were also told “it might correct itself” or “it might get better” or “it’s not too bad” when she was younger (toddler). We tried glasses. We tried patches. We tried observations and studies. We tried just about every option. As each year passed, the deviation became more pronounced. (Visible) Recently, we took her to one of the top specialists in the nation, one that ONLY works with this type of disorder in children. He said that unfortunately, she stands a chance of losing total depth perception. (Her vision, for now, is still 20/20) He also said that no matter what some other “specialists” say, the condition is not “fixed” with surgery. The surgery is an ongoing event – she’ll have to have it done periodically throughout her life as there is no “cure” for this. He said that basically, her eyes will continue to deviate over the years and that when it becomes this noticeable, she’ll have to once again have the surgery done or it could impact her ability to do certain “everyday” activities later in life – drive a car, for example. He told us that he sees so many people every year that come to him, disappointed because other specialists have promised “it would be fixed” and he said that that is never the case with Intermittent Exotropia. So…after what seems like a very long time (7 years), we are finally opting in on surgery. She’s having hers performed by this particular specialist/surgeon (and this is ALL he does, for the record. He performs 400 of these surgeries a year!) and it will be done in one of the top children’s hospitals in the nation, too. She goes in less than 2 weeks. I’m so nervous but I’m also a little excited that at least for now, the condition will be “put in check”, even if it is only for 5-7 years. The surgery is outpatient and she’ll be home that night. She’ll have to stay home from school that day and the next but on the 3rd day, she can go back to school with minimal restrictions (no P.E. and no recess for the remainder of that week) but that after that, she can resume normal activities with no worries. Just thought I’d share part our journey with this.

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    • TS, my daughter has intermittent alternating exotropia and we have had 3 PO opinions over the last 4 years, all of whom recommended surgery, as well as several months of vision therapy. I have not been comfortable with the idea of surgery when the outcome statistics are not very encouraging. I am particularly interested in knowing more about your surgical experience, as well as name/location of your surgeon. Would you be willing to share more information? This is a stressful and difficult decision to navigate. Obviously, we all want what is best for our children, but figuring out wht is best is confusing when information is NOT consistent. Hope it went well for you.

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    • Hello! May I ask what is the name of your Doctor that you saw and were how is your daughter doing now with the condition she had the surgery?

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  33. @ TS: Can you please share the name & location of this top doctor doing the surgery? I’m in need to get another opinion for my daughter whose doctor from The Wills eye institute in Philly said she may need surgery for her intermittent exotropia. Thank you!

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  34. Hi sheetal, did you take your daughter for vision therapy? My daughter is 2 year old and has intermittent exotropia (left>right). We did patching for 2 months but the PO said don’t as her vision is normal. I am going for another appointment soon and want to emphasize on vision therapy. Is anyone on this forum from bay area, CA and know any good optometrist who does vision therapy?
    Thank you for starting and participating in this forum. It gives me lots of hope.
    NS

    Like

    • Hi NS,
      I’m also from Bay Area, CA. My 2.5 yo daughter was just diagnosed two months ago with intermittent exotropia at distance (although I’d swear I see her deviate at near too). I’m also curious about vision therapy.

      I have not confirmed but heard that the school of optometry at UC Berkeley does vision therapy. I am planning to see a PO there too for a second opinion on my daughter’s treatment. Let’s keep each other posted!

      Like

  35. My daughter was diagnosed at 22 months (now 3 1/2 years old) with V-pattern intermittent exotropia (eye drifts out) and Hypertropia (up) with overaction of the left inferior oblique muscle. She has weakness of the left Superior Oblique muscle. Left eye drifts outwards 9 degrees. Vision is 20/40. She has Intermittent Exotropia only seldom in right eye too. She has binocular vision as eyes work well together. Her doc at Will’s Eye Institute in Philly asked us to track how many times her eye misaligns and it has increased from 5 times to 7-8 times per day (that we see, at least).
    Also, at 1 month she had Benign Paroxysmal Torticollis (alternating left and right head tilt) but that stopped at 2 years old.
    At our last visit, her doc stated she was not controlling her eye misalignments as much so she may need eye surgery. That scares me!! Doc said that patching, prism glasses, eye exercises are not necessary. I went for a second opinion and that doc said she is still young so we have time on our side, but after the appt I thought:
    At what age do you start to lose depth perception? When does intermittent exotropia become perminant exotropia? Is the benefit of waiting to do the surgery so she can control it, but my sister knows a 45 y.o. with IE and he says he controls it but my sister sees the eye drift a lot and everyday so how is it that he is so-called controlling it? Is she seeing double vision or perceiving 2 separate images?
    I asked my 3 1/2 year old after her eye drifted out, if she said she doesn’t know it’s happening. She could be too young to understand what I’m asking, but if you don’t know something is happening, how can you controll it?
    I have these questions written down for my next appt in a month, but if anyone knows these answers, has insight or feedback please share.
    Also, if anyone has a top notch pediatric Ophthalmologist that’s in the NJ, PA, or NY area, please share contact info. I would want a 3rd and 4th opinion if her doc says surgery.
    God bless all of you going through this too. I’m happy to have found this forum and see I’m not the only one going through it.
    Thanks!!!
    -Scared mom

    Like

    • Hi gattica99,
      Get a second opinion on your treatment options. It sounds like your PO is just observing her now and not treating it?

      I’ve done a ton of Internet research since my daughter was diagnosed 2 months ago, and if there is anything to conclude it’s that there is no consensus on how to treat intermittent exotropia. In fact, the mayo clinic is doing a study now for exactly that reason!

      With my daughter, we have been doing alternating patching for 1 hour/day as prescribed by her PO, and at her last checkup, the PO said her control improved and is now very good. I’d agree with this as I rarely see her eye deviate now (I more often see her rub her eyes). Before we started treatment her eye would deviate for longer periods and she seemed unaware of it. I think the patching forces her to exercise both eyes which stops suppression and results in double vision when an eye is deviating (hence alerting her to correct it). From what I read, young children will not otherwise see two images. They will initially at onset of their condition, but soon the brain just suppresses one eye so they are unaware of the deviated eye (and hence the exotropia is more likely to progress).

      Patching seems to be working for us so far, but according to this article, vision therapy is the most successful treatment option.
      http://www.ncbi.nlm.nih.gov/m/pubmed/1594200/
      I’ve also heard stories of adults having issues controlling their drift, but getting back in check after doing a vision therapy “refresher”.

      Wishing all the best for all our children and so happy to have found this forum!

      Like

  36. Hi Scrystal,
    I actually called UC berkeley school of optometry. They do vision therapy there but the minimum age is 6 years old. Also talked to 2 ophthalmologists and he didnot seem very enthusiastic about it. We are going to see pediatric opththalmologist next week. Lets see what he has to say about it.
    Yes, lets definitely keep each other posted on the developments. Hopefully things will get better.
    NS

    Like

    • Hi NS,
      Check out covd.org to locate vision therapists. I have found two so far (I haven’t called them all) that will see my 2.5 yo daughter – Dr. Gina Day in SF/Larkspur and Dr. Laurie Chaikin in Castro Valley.

      Like

  38. Hello there,
    I am currently 18 years old. I have had the same condition as you daughter for as long as I can remember. I remember being patched on my left eye until I was at least four or five years old. As a result, I can see far in my right eye, but can hardly see at all with my left eye. We went ahead and did surgery between when I was 6-10 years old. This GREATLY improved my control over said eye. The issue never went away though. FEAR NOT, this condition does NOT hurt. It’s only irritating for self-image.

    Over the years, the eye doctors I’ve had have kept a close eye on my condition. Whenever I was a freshman in high school (9th grade/14 years old), they put me on contacts. This really helped. However, like most teenage girls, I got lazy and stopped putting them in. My parents also kept a close eye on my vision over the years. They’ve said they hardly notice it. However, if my mind starts drifting off into ‘la la’ land or I start to day dream, my eye MIGHT wander.

    The best I can recommend is the surgery. It really makes a difference. There’s minimum risks with it. Sadly though, with my experience, I don’t think there’s a true “cure” for it, since this is a muscle issue and NOT a pathogen issue. I wish your child the best of luck 🙂

    Like

  39. hey
    i am having this same problem of intermittent strabismus since my childhood i guess! i am 19 now! in my early days i was taken to a doctor(i think i was 9) my vision was perfectly fine then..the doctor asked my father to wait for a some years..he asked me to try some eye exercises because he thought that my squint would disappear in some years! but the problem got worse later! even my vision got affected..i have far sightedness now! Though not many people notice the eye deviation..but its frustrating when people point it out or make fun of it..i dont have any other problem apart from the cosmetic issues..i am too shy to talk to my parents about it,,i really dont now what to do!.

    Like

    • Cassie,
      You should really bring this up to your parents!!! I am sure they will help you get the help you need so that your condition doesn’t continue to progress. This is nothing that you should be ashamed about or made fun of. People that make fun of your condition are people that just aren’t informed. My daughter was diagnosed with intermittent exotropia when she was two years old and is now almost six years old. We have dealt with our share of people who just aren’t informed but what is important is that we are working on her problem and getting her the help she needs. She had surgery and it has greatly improved her problem but we are still working on it. I just started blogging our expierence with exotropia if anyone is intrested here it is isasmom83.blogspot.com.

      Good luck to you Cassie and I hope that you are able to speak with your parents and get the help you need not only for your eye health but also for your self confidence.

      Like

  40. my 3 yr old son also has intermmittent extropia with little upward deviation. OP here in Sydney Australia suggested surgey after patching for 5 months. Otherwise he has good vision. We noticed when he was 17 months old….I don’t think it has got worst…we are in dilema whether to g for surgery or leave it like that…Op said that it can be issue in the school when others would bully him…May God help me and many of us to make right decision..

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  41. Hi,
    There is new way of scoring intermittent distance exotropia.
    New castle score.
    Research has done and it says it is more reliable. It ‘s better you ask from your Orthoptist. Because I think she is the best person to answer.

    Like

  42. My daughter is 5, was diagnosed early this year with exotropia & has had the surgery… Unfortunately it did not work & she now wears glasses with a prism in the lenses to help straighten the eye… Now her dr says the glasses are not working and wants to do surgery again… I think i want a 3rd opinion but am not sure where to turn to… I live in connecticut & am willing to travel for her, just hate for her to have to go through another surgery…
    thanks,
    cecily

    Like

  43. Just sharing my experience…

    My daughter is 6 years old now and has had a squint in one of her eyes for the past four and half years. I never took her to see an eye specialist before, as I remembered my brother having the same problem at that age, and his squint corrected itself at the age of about 6/7, and because my GP kept telling me it’s nothing to worry about, and that it will correct it self. So all these years I’ve done nothing, thinking her eye will correct itself, but now it has got really worst.

    For the past 5 months or so now, her squint has became a worrying issue as she has started to deviate about 5 times an hour, as oppose to about 4 times a day in the past. In the earlier years it use to be once a day or sometimes once or twice a week.

    So last week I took her to see an eye specialist who diagnosed my daughter with basic intermittent exotropia (Strabismus) 30 prism diopters and told me that surgery is the only option.

    I’ve been reading up on the condition since and have decided to get her seen by atleast 2 other specialists, before going ahead with surgery. I wish I had acted sooner, I might have prevented surgery.

    Kel

    Like

  44. even if you’re going for surgery, don’t neglect some vision and developmental therapy. Kids with undeveloped or impaired brain control over the eyes (the eyes are healthy in this condition) don’t use vision they use adaptive ways to get through life. the therapy can help them train their brain to use visual information fully. the adaptive behaviors work, but not was well as using both eyes together. therapy takes a lot of effort at home and often isn’t covered by insurance (some companies cover it, some after a hefty deduction). i reasoned that vision is so crucial it’s worth the financial struggle it’s been for me. the therapy will also reduce the amount of nausea/dizziness that kids often experience but don’t know to tell you because things looked and felt this way for so long they think its normal. that means school gets easier too so sometimes behavior gets calmer. i followed ophthalmologist’s directions and watched and waited only for years and regret that very much – i could’ve been helping years ago.

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  45. Hi everyone, my 19 month old daughter also has intermittent exotropia. We first noticed it when she was about 4 months old in her left eye, but its actually in both, though the left eye is much worse.
    Her vision is apparently very good, but due to the fact that her eye was getting steadily worse in terms of drift and the amount of time she was doing it every day the Doctor said we should consider Botox surgery for her to weaken the muscle and see if her eyes could learn to stay straight.
    On the 8th of October this year she had Botox in both eyes and after the surgery which lasted about 15 minutes we saw an improvement straight away, her left eye was drifting at least 20%-30% less than before and in the next few days her eyes were almost perfect and no one who didnt know her eyes drifted would have noticed anything.
    After that her eyes started crossing, which is to be expected in botox surgery, but to be honest I still felt that even with her eyes crossed it looked better than before the surgery. At around 3 weeks after surgery we saw her doctor who said that she was still slightly crossed due to the botox but that her eyes looked very good and we were very pleased with the results.
    Its been about 1 and a half months since her surgery and about two days ago I started noticing her left eye is drifting out again. I feel so heartbroken, its not drifting out anywhere near like before, shes doing it maybe 10 times a day as opposed to about 80% of the day before the surgery, but I’m wondering is this a start of the return back to how it was before.
    You see the botox paralyses the muscle and its up to her brain to learn to keep them straight and I am basically worried that her brain hasnt learnt it and once the botox has fully worn off she will be back to drifting again. I think some part of me had even started to forget what she looked like when her eye was drifting.
    Before the surgery the doctor told us that she could need more than one dose but he also told us that the results would probably be at their best around this time, where as it was probably better a couple of weeks ago.
    Does anyone have experience with Botox?
    Also I was wondering how everyone keeps their little ones calm during their appointments, my one used to be so well behaved but I think the stress of her recent appointments has caused her to start misbehaving and at her last appointment the doctor could barely get a look at her as she was so upset.
    How does everyone cope with the feelings that having a child with exotropia creates. I am so obsessive with watching her eyes and it is constantly on my mind. I feel a fair amount of guilt as I passed it on to her through my family (I dont have it but many family members do)
    The funny thing is my daughter has very beautiful eyes (long eyelashes, and unusual colour) but I feel like I have lost the ability to really look at them as I am so concerned whether they are straight or not. So many strangers have commented on how beautiful her eyes are, but in the back of my mind I always wonder did they see her eyes drifting.
    Anyway thanks for listening and I hope someone can give me some advice

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  47. My daughter is 5 yrs old and has intermittent exotropia, her vision is 20/20. We noticed the eye drifting at about 6-7 months old. We watched it up until age 5 and it still was not better, it drifted and stuck alittle over 50% of the time. We decided to have the surgery at age 4 because we had waited this long and it had not gotten any better, I also wanted to get it corrected before she started Kindergarten. The surgery did not last long at all and the only symptom she had after surgery was the white part was bloody for several days and you could see the stitches which do dissolve on their own when she look to the side. Her eye is better, but I will say it still drifts some, but mainly when she’s sick, tired or in the bright sunlight. She has not had any problems and it is much better than before surgery.

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    • I had my 6 year old daughter seen by an eye specialist a few months ago and he told me that she has intermittent exotropia. I started to notice the deviation in her eyes, after she turned 1, but thought it would self heal, so didnt get it looked at, at the time. The specialist told me to get surgery done straight away, but i decided to go for second opnion.

      The second specialist told me to perform daily eye excerices with my daughter, which i have been doing religiously since, and to my joy i have seen great improvement. She only deviates about once a day even if that now, whereas in the past it got to the point where she was deviating her eye every 10 minutes!

      Like

      • My daughter is ten and had a mild case of this only in her left eye, as if overnight it started in her right eye . She has great vision but only happens when day dreaming and distance , I am beyond worry and guilt ( passed on from me) what exercises have helped??

        Like

        • Eye exercise that helped reduce my daughter’s eye deviation: hold a pen/pencil’s tip at a arms length from the child. Child has to keep focus on the tip. Slowly bring the pen forward towards the nose of the child, child has to keep focus on the nib of the pen. Take the pen right up to the face and both eyes will come in towards the nose, if child is focusing properly, and hold for 10 seconds. We do this 10 times, twice every day. At first her eyes use to hurt after the exercise now they don’t, she holds the pen herself, and does her own eye exercise now.

          This exercise is only suitable for children with intermittent exotropia.

          Like

  48. My daughter is 2.5 yrs old and we first noticed her left eye drifting out (exotropia) and up at times (less than half the time, but close to half) when she was about seven months old. Our ped said at the time that it can be developmental up to a year, but we saw a ped. opth. before then. He said my daughter seems to have a pigment spot (or hole, it cannot be determined) on her retina which may cause the eye to lose sight in a small but crucial zone in the middle of its field of vision. The doc said this may result in the eye drifting to try to ‘see around’ the sightless zone, even if it’s tiny. (He’s a ped opth who also does a lot of surgery).
    He said we need to make sure the brain doesn’t ‘turn off’ the eye in favor of her right eye which seems dominant (when her left eye drifts, her right eye makes contact, it was never the other way around). He said to start patching her stronger eye, which is meant to make sure her left eye gets a workout and gets used every day to avoid the ‘turn off,’ which the doc said is possible during childhood development, all the way up to age 9! Then, at some point between now and age 9, he’s suggested that surgery may be an option to correct the alignment, but it’s too early yet for surgery because she’s still developing and the misalignment may get better or worse for a few more years.
    When we heard this we started patching right away, 3 hours a day or about half her waking hours at the time (around age 1). Since then we have scaled up as she sleeps fewer hours as she gets older, and now that she is 2.5 we are up to 5 hours a day.
    Since we have been patching we haven’t seen much positive change. In fact, I’d say during the hours she’s not patched, the left eye drifts up to 75% of the time now. My concern now is that we are ‘over patching’ as I’ve not ever heard or read of anyone patching for more than a few months, and not more than 3 hours a day either. Our doc said we can’t over patch, but it seems to me that her eyes aren’t ever getting a chance to try to work together since so much of her day she’s patched.
    I think it’s also problematic that we need to patch her first thing in the morning, b/c of her daycare schedule and our work schedule. It’s problematic (hunch) because her eyes are always aligned when she wakes up in the a.m. Makes sense because she’s just woke up, is well rested and indoors, it’s not too bright, etc. I wish we could keep the patch off for a bit in the morning and then put it on in the afternoon, even if we kept up the 5 hours a day, but the morning hours seem like a good time to try to let her eyes learn to work together. Otherwise I feel like we may be keeping the left eye working, but we’re definitely not training her eyes to work together. Remember after the patch comes off in the afternoon, she’s more tired and eyes are rarely aligned for the rest of the day. Are we “saving” the vision in the eye, which is important of course, but reducing our chance for binocular vision and natural alignment, and patching our way into a series of frustrating surgeries for cosmetic alignment?
    Note, I’m not against surgery at all for cosmetic reasons! But if we do it, I want all this patching therapy to support, and not work against, our chances of alignment as well as vision.
    One other note, in just the past few days, I’ve been looking closely and I swear I’ve seen her “good” eye (the one we have to patch) start to drift out! This would mean we are over patching. My wife hasn’t seen it happen yet, but if true it would confirm that we may be ‘over’ patching.
    It’s pretty confusing because every situation of exotropia seems to have a different cause (muscular seems more common, but retinal defect as my daughters’ isn’t as common?), and we all seem to get different recommendation from different docs (read above), so there really isn’t any standard it seems at all. Which makes me concerned about taking such a radical approach of so many hours of patching per day – one might view our doc’s approach as experimental. Am I off base? It would be helpful to hear from others who are aggressively patching, reasons, causes, outlook for surgery, changes in eye drift, etc.

    Like

    • I thought too about the harm that patching can bring, and just noticed that I’m not alone. I’m sorry for my English. When we 1st came to our PO, my daughter was 2.5 years old and was diagnosed with intermittent exotropia on right eye. The PO recommended patching, we did it for few months, then I started noticing that her left eye starts drifting too! Then, the PO said that we should start patching one eye 80% and one eye 20%. I already regret we started this patching on the 1st place. My girl now developed the ability to drift any eye she wants. She’s just switching the eyes when looking at distance, and it’s hard to tell which eye she picks next time. Now she’s 3yrs old and she walks most of the day with one eye drifted out, mostly right. The PO said it’s too big deviation, patching doesn’t work and she needs surgery. So, we quit patching and now thinking about second opinion or surgery. I’m glad I’ve found this web-site and read comments from people with same problems.

      Like

  49. Can anyone here who has a little one with exotropia – especially congenital exotropia – share if the little one also has a neurological disorder? I live in a country where English isn’t the first language (though it is mine) and the doctors told us we have to get our little one checked for brain issues. She isn’t really showing any other signs, but I’m now spending far too much of my life researching signs that she doesn’t have in fear of what we might learn in a few weeks at her specialist appointment.
    My family has a history of ‘lazy eye,’ though nobody has exotropia, so I’m just trying to figure out if she can have that on her own or if I should prepare for a bigger diagnosis.

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  50. I´m so scared, I live in Portugal and I´ve been reading about this for a long time. My daughter has been going to Pediatric Optomology appointments since she was 6 months old and patching since 1 year of age. She´s almost 5 now and has been patching everyday for 2 hours only her left eye because she has more exo on the right eye. But she only does it when she´s tired,or not focusing on anything or with sunlight. Her doctor said on the last appointment that she´s going to need surgery next month. But I´m scared that she may become cross-eyed., because on a regular basis she has aligned eyes. What should I do ? It´s been 5 years and no improvement and has become worst because now she does it most of the times with both eyes.

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  51. Hello all! I wanted to share my situation as an individual with intermittent exotropia of my right eye. I am a 28 year old female who was diagnosed with strabismus at around 2 years of age. I underwent aggressive eye patch therapy for a few years of my life following that diagnosis.

    My mother was told by the first physician she took me to that surgery was the only option (my strabismus is due to issues with my ocular muscles, not a neurological disorder). She was not satisfied with his abrupt leap to surgery, so she took me to two other specialists (this was the 1980’s). The physician she settled on, Dr. Helen Hittner (Houston, TX), took the stand that surgery was not the correct intervention. She was the one who ultimately structured my patch therapy as the appropriate mode of treatment.

    Fast-forward to the present, and I am a thriving, successful adult with 20/20 vision who has a student pilot’s license, teaches fitness and yoga, works in nursing in a hospital, paints, and plays musical instruments…all of which are areas requiring extremely laborious visual hours. I never had to receive any further treatment for my eye past my youth, and I can control my exotropia to such a degree that I can actually voluntarily turn the eye out and back into alignment on command. Now, I am not suggesting that this is the outcome for all, but just that it IS NOT TRUE that all cases need surgical intervention.

    So to the parents dealing with the early onset of symptoms of intermittent exotropia, take a deep breath and try to remain calm as you seek a few solid opinions before you rush to any immediate conclusions. Do not let any medical professional in any discipline intimidate you or make you feel afraid. I would automatically walk out of the office of any physician who could not calmly and rationally discuss the advantages and disadvantages of different treatment options in a way that is sensitive to a parent’s emotional concerns about his or her child’s health.

    Good luck to all of you as you find the correct treatment options for each of your children, and I wish you all the best!

    Like

    • Findingtruehealth, thank you for this!!!! Most of the information online is not so optimistic, but your story gives me hope for my daughter (now 3.5 and diagnosed a year ago). We have also been patching and doing vision therapy and have noticed huge improvements in her control.
      If you remember the details of your patch therapy, I’d love to hear all about it! Which eye? How many hours/day? Anything else?

      Like

      • Not sure if I am replying in the right area, but my son was diagnosed with intermittent exotropia at 18 months. We found a good PO who said since it was not constant, and that his eyes were aligned more than 50% of the day, that it was best to wait. We did Alternating patching, but like all of you it consumes you in a way with worry that is there something you can do to help it get better. I’m glad we waited though, because although it still goes off during distance viewing or when something obstructs his vision, it seems to still be the same, he is 7 years old now and we only notice it when he is in the car (lots of obstructed viewing) or when tired or sick, or daydreaming. I got 3 different opinions and the new place I started going to was more for surgery. But there is an excel eye institute near me that does vision therapy and I plan to get a fourth opinion there. It seems that there is no super solid medical background to this problem- I have read where experts say its muscle, and I have read its not muscle but the brains fusion process is just off and that is why even if you tighten the muscle, eventually it will drift again…which is why some doctors say therapy helps teach the brain to use the eyes together. It’s always scary as a parent, but I say research like crazy, I read everything I could online about this, and see several doctors until you really like one. And I wouldn’t rush into surgery unless the eyes are unaligned all the time or most of the time. On our last visit this doctor seemed to say he was deviating more and needs surgery but I know we haven’t been patching much – the patching does strengthen the eye- but we only do about an hour to three hours tops on the weaker eye. Alternating patching is where we saw the most progress when he was between 2 and 5.

        Like

      • Dear Scrystal,

        My son who’s about 15 months just been diagnosed of this condition, can you please advise where did you find Vision Therapist who would accept smaller patients than 6? Almost all the places I looked require the patients to be older.

        Thank you very much for the information!

        Like

  52. Hi all,

    My son is 19 months, and was recently diagnosed by a PO with intermittent exotropia. I wasn’t surprised, since I had a very severe case when I was his age. I had surgery when I was 22 months, as mine was more than 50% of the time. My parents tried patching, vision therapy etc. prior to this, but not very aggressively. The surgery caused a very large overcorrection, and I ended up wearing glasses (I became esotropic…which my PO claimed was the better scenario…which I think was him trying to cover his butt).

    By the time I was 15, I learned how to control the turn, and by my late teens my eyes stopped turning altogether (my vision has always been 20/20). I am 30 now, and don’t wear glasses or contacts at all…even though I technically should because I have a bit of astigmatism. Hey, I wore glasses since I was a toddler, I want a break! Lol. Anyway, I’m not ‘cured’, as I don’t think that’s possible. If an eye doctor dilates my pupils and does tests to ‘break’ me, I still have a slight residual turn. But really, considering how severe my case was, I have nothing to complain about. I have been with my husband for 8 years, and he has never seen my eyes turn (not even when I was coming out of surgery for my wisdom teeth, and was seriously out-of-it).

    What’s the take home here? Every case is different.

    My son is being followed yearly, as his turn is slight (18 diopters), and he also has 20/20 vision. Interesting fact: my mother (who is in her mid-50’s), recently went to an opthamologist for the first time in her life for a vitrious floater. The doc asked ‘Have you always had an outward turn in your eye? Your eye turns out an eighth of an inch when dilated’. She is a nurse, and had no idea! I think this condition is a lot more prevalent than we think, and some people have it to a very minimal degree without even knowing. But I digress.

    I have to tell you, having strabismus really isn’t so bad. My social life was very normal as a child, I had lots of friends, and it really didn’t inhibit me at all from doing anything I wanted to do. I played baseball, learned classical piano, went to all the school dances, had boyfriends. I know you want your babies to have the best there is, and they will. My mother said she used to walk the halls, crying and worrying what this condition meant for me…especially because I was a girl, and the world is a much more cruel and superficial place for us. I have really large, dark brown eyes (I’m blonde and fair-skinned) and they are what I get the most compliments about as an adult. My mom thinks it’s an interesting twist of fate that the one thing that was ‘wrong’ with me as a child and what they tried to hide, has become my most memorable feature.

    So am I worried about my son? No. We’re not going the surgery route, and our PO doesn’t think it’s necessary anyway. We will go for our yearly follow-ups, and hope that it stabilizes. I can’t control it, and he’s so young. Who knows what will happen. If when he gets older it bothers him cosmetically, I will let him decide if he wants surgery. I personally wish my parents hadn’t opted for surgery, but it was 1985 and they didn’t have access to the same resources/support that we do now.

    Every PO has a different opinion, and every case of exotropia differs from the next. Just take it one day at a time, get all of your information and facts together, and do what you think is right for your child. You will make the right choice.

    Like

    • startermama, self control/correct to the eye turn..I am interested to this, can you tell us how do you do that..what trigger you to merge the image? my son is almost two yrs old with intermittent exotropia. Hope his eyes will be better, we plan to bring him to VT to train his eyes. I also have one question, who can answer me..please..By giving our kids a spectacle to wear as early as toddler age, can it help to correct the eye turn? Pls share if anyone has experience that an intermittent exotropia is gone after a treatment with spec.

      Like

    • Startermama, that is such a lovely story you just recounted. It made me really happy to read your optimism and positive outlook. I am worried sick about my niece and am going to share this right away. Good luck to you and thanks for sharing your story.

      Like

  53. My son is four and I was just told he has intermediate divergence excess exotropia… I only notice it if he’s looking in a far off stare I don’t see it everyday… My doctor told us to do pencile push ups for the next 6 months and that was it. I’m going to another doctor to see if we should start some other treatment. I was wondering how your daughter is now ? Has anything changed ? What are the steps you have taken so far

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  54. Hi sheetal n everybody else..my daughter is 2years old n going thru d same problem.. N am worried as hell too..am glad am not alone here coz I’ve been having sleepless nights too..am living in NJ n visited one f the pediatric ophthalmologist once..I don’t mind getting a second opinion so can anybody recommend a few names that I can consider consulting..thanks..hope all our little babies will get better soon..good luck to everyone!

    Like

    • Hi sm, you can visit, Jeffrey Cooper, O.D., 539 Park Ave, New York, NY 10065
      212-758-0772. I did go to quite a few docs in the area and this is the one that I had liked. he had a rational approach, not an extreme one like lot of other doctors.
      I had one in jersey city too but cant locate the number.

      Like

  55. Hi Everyone,My daughter has been dignosed with intermittent extropia recently.. she is 8 months old.I saw first time when she was 5 Months old. Right now we are doing 30 min patching strong eye (right eye)everyday. And doc has prescribed full time glasses. Could all of you please update on how your little ones doing now. This can help me . I will also keep posting.

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  56. Can any of you attest to improvement as a result of vision therapy? My daughter has intermittent exotropia. We are currently patching 1-2 hours/day on the favored eye. The doctor has suggested moving to glasses (not prism – just a minus prescription, for one year… he says that after the year we stop the glasses, and 1/2 of kids seem to keep the improved alignment), though he’s fine with us waiting another 3 months (at which point we’ll be back in for another checkup and will discuss it again). We’re wondering if the astronomical expense of vision therapy would be worth it. It’s hard when the pediatrician and the PO say that there is no benefit to vision therapy.

    Like

    • Kristine,
      My daughter was diagnosed with intermittent exotropia (alternating eyes) two years ago – she’s now 4.5 yo. Our PO prescribed patching 1 hr/day (alternating eyes) and talked about minus lenses in the event that patching didn’t help. She had/has normal vision in both eyes.
      We did/do vision therapy and her control of the drifting is mostly excellent now (all bets are off if she’s sick or tired)- although it’s hard to know if it’s been the patching, the therapy, or just time that has caused the improvement. I have noticed though that when we relax a bit on the VT exercises, I’ll see the drifting more often.
      Our VT journey started with weekly visits to a developmental optometrist with prescribed exercises at home. As her control and binocular vision improved, the frequency of office visits decreased. The last time we went was June 2013 and the doc said he didn’t want to see her for a year! We still do the exercises at home….it’s not a permanent solution, but rather a maintenance plan. I guess the point though is if you can afford it, you should give it a try. And if money is tight, do as much at home as possible – the office visits are only needed for learning the exercises and checking up that things aren’t getting worse (though you could also learn this from observation and PO visits). Anyway, good luck! Happy to answer any other questions…

      Like

      • Thank you so much Scrystal for your inputs. Can you please kindly advise where you are doing the therapy? Also when did you start the therapy for your daughter?

        Thanks again!

        Like

        • Phoebe,
          I searched for a developmental optometrist near my house (Northern California, Bay Area) with the help of covd.org – it lists doctors by location and also shows what degrees/certifications they have. I called a few and not many would work with children so young (my daughter was almost 3 when we started VT), so that helped narrow it down. It’s hard to remember for sure, but I think we did about 2 months of weekly visits, then another 2 months of every other week…then occasional checkups. We’d do exercises at each appointment as well as test to see her progress. The home exercises we do now are basically 3 things: 1) patch 30-60 mins/day as PO prescribed, 2) read books with “flippers” 3 nights/week, and 3) watch TV/laptop with TV trainer as often as possible. The flippers are two sets of lenses that alternate how she sees….1 set flips between plus and minus lenses and 1 set flips between in and out angled prisms, basically forcing the eyes to practice focusing/converging under different conditions. The TV trainer is a red/green screen that gets placed over the TV while watching with red/green glasses. If an eye turns and/ or gets ignored, then part of the picture she sees will go black. Basically, it makes her aware that an eye is turning so she can focus on trying to correct it.
          Hope this helps.

          Like

        • Scrystal,

          Thank you so much for the detailed explanation and VT methods. My son has just turned 2 and had been diagnosed for over a year, we are currently only patching for 1:45hr/day. He had been responding to patching so far and I am looking into VT possiblility to enforce the results more. I also live in the Bay Area, do you mind sharing your current doctors information?

          Thanks again! Your post has been so helpful and detailed, and gives me even more hope that our kids will all eventually get better without surgical intervention.

          Phoebe

          Like

  58. Scrystal,

    Sorry to bother you again. Would you be kind enough to share your doctor’s information with me? I have been looking for an doctor in the bay area, but still have not fuond anyone with a great reference. I know you may not feel comfortable sharing the information here, Here is my personal email: wanwan.zhang@gmail.com. Thank you so much in advance!

    Phoebe

    Like

  59. Hi Everyone,
    Could you all please provide an update on how your kids are doing (if poosible)?My daughter have same condition since she was 5 months old and currently we are patching both of her eyes alternatively though she has good control over it but I say time duration of drift is increased over the period of time.
    I know every kid is diffrent with this situation still I request you all that please let me know how is your kids doing with the treatment that they are on, if they went on surgery how was the outcome. Any good/bad experience or suggetion ?

    Like

    • I first posted on this list 4 years ago when my daughter was 3 and we were in the ‘why her’ phase. She turned 7 today 🙂 We patched every day initially (which was very hard on her) but have since then have moved on to pencil push-ups and computer software exercise. Her doctor claims that she has improved based on the prism measurement and we notice improvement but i feel that the perceived improvement might also be because as she gets older, she is better able to control it. For example, if she is very tired or upset now, we see a lot more drift. She has always had 20-20 vision.

      We’re relieved for now that the condition is stable (or seems to be) and plan to continue with the eye exercises going forward. Keeping our fingers crossed!

      Like

  60. my daughter emma is having difficulty keeping focus. her eyes go outwards everytime she turns her head to look at something new. she just turned 2 in August. i have taken her to her peditritian and she says there is nothing to worry about. as her mom i cant sit here while her eyes do that and not think anything is wrong. i am trying to do my homework and read up on this so i have questions that get answered. HELP!!

    Like

    • Samantha,

      I remember feeling the same way 3 years ago when my daughter started having symptoms and was diagnosed (she’s 5 now).

      Relax. Breathe.

      My daughter did daily alternating patching and vision therapy. Her control is mostly amazing these days, and as a result we’ve gotten lazy with the patching and eye exercises. I’ve encountered a number of adults along the way who have been “oh yeah, my eyes were like that as a kid, but I grew out of it.”
      So as hard as it is, you just have to wait and see. And if you want to do everything you can, see a developmental optometrist/vision therapist….do the patching your PO recommends.
      My daughter’s eyes still go out when she’s tired and sick or lazy/watching TV or just needs to rub her eye, but she can also feel when it happens and usually fix it with a couple blinks.
      Good luck. Keep us posted.

      Like

  61. Hi,

    My son was diagnosed with intermittent exotropia at a little over two years old. We started seeing an ophthalmologist, but after patching for a couple months the PA told me that he was going to have it the rest of his life and surgery is not done unless the eye goes out more than 50% of the day. I didn’t want to do surgery in the first place, but after that I did some research and found an optometrist that specializes in vision therapy. A few months after he turned 3 we started vision therapy and I think I see the turn less, he never really had it that much, only when he is tired, watching tv, and daydreaming. He has alway been able to bring it in with just a blink or by changing his focus. He also wears glasses prescribed by the optometrist that have no prescription and have clear nail polish blocking the right half of the right lens (I think it’s called bi temporal occlusion). He has 20/20 vision and the optometrist just brought up patching. I have read stories and talked to parents where the patched eye became weak and started straying from being patched. Has this happened to anyone, makes me nervous to start patching. Thanks!

    Like

  62. my 2 son left eye has started drifting outward and then inward he had a MRI and everything came back fine.we are looking into seeing an eye doctor. I am nerveous cause I neved went through this with any of my other children would like to know what to expect next. I am a bit scared for hm doesnt seem to bother him but it is noticable.

    Like

  63. Hi there,
    My daughter is 11 months old and she is having estropia ( alternating inward turning). It was diagnosed at her 6 months check up and referred for the surgery. Her vision is perfect. the turn is intermittent though i m not sure how much. Some days are good whereas others are really bad.We have booked in for the surgery on 19 th march and as the time is getting closer we r getting more nervous about our decision.
    I just want to ask you guys if Any other mode of treatment would be helpful.
    Sheetal hows ur daughter goin? Do u think
    We should also wait and try vision therapy. We live in sydney and i couldnt find any vision therapist for infants. I would appreciate ur quick replies or suggestions.
    Thanks

    Like

    • Hi Timsy,
      I think that being nervous is totally normal, especially when it comes to something like surgery. My daughter did have surgery, though her circumstances were different: constant eye turn, accompanied by farsightedness. Her surgery was successful, but I think you need to listen to your gut as well. Getting a second opinion probably makes a lot of sense. Vision therapy would really be your other option. If you can’t find a vision therapist that works with infants (and I think there are not many), then could you meet with a vision therapist who works with children and get their perspective on what they would recommend?

      Like

      • Thanks for your reply Ann. Yes we did get the second opinion and that was not very long ago( last month only). She said my daughter has a atypical congenital esotropia in which she turns her eyes inwards occasionally specially when she focuses on close objects. The second opinion wasnt very conclusive. She did ask me to wait a bit coz she told me that there is a 10% chance of getting it right by itself but there is a risk of vision problems if it doesnt. The other thing is we dont have a private insurance so we were on the waiting list from past 5 months. Now we have got the date and if we dont take it then we may lose our waiting, then we have to go through the whole process of waiting again. If surgery is the only option sooner or later then i think sooner is the better. We thought it that way when decided for the surgery.

        Like

      • Ann how old was your daughter when she had the surgery. How was the recovery period? Any special advice from ur experience? Thanks heaps for Your kind suggestions.

        Like

      • Thanks heaps Ann. I got so emotional while reading your story. Its so hard for parents when their little ones go through this. We had a pre surgery appt with the opthalmologist today and measured her drift which is 30 degree prism. She wasnt looked very concerned and said its not too bad. Surgery is due on next thursday. We got all the instructions but time has not fixed yet. The hospital will inform us just two days before the surgery. Ann can i ask you how did u go with the fasting instructions? As they asked me to keep her fasting for 6 hrs and can give only water and clear juice (apple juice). Thanks a lot for all your help. Much appreciated.

        Like

        • I was so nervous about the fasting instructions! I was sure that it would be a big issue for us. We scheduled the surgery for first thing in the morning, and made sure she had a big meal the night before. But then the morning of, everything was so new and different (getting up early, going to a new place, seeing new people, new toys in the waiting room…), she never asked to eat or even drink, so it ended up not being an issue for us at all. I do think having an early morning surgery time helped a lot.

          I totally get being emotional. I still get a little emotional reading this post, even though I know that it all worked out well, because it really was hard as a parent to go through this.

          Good luck and please keep me posted!

          Like

  65. Hi All,

    This seems to be a very active website… I am hoping that some of the original people that have posted could give updates on their children. On what worked on what didn’t work. It would be so much appreciated as this is not an easy journey to be on. Sometimes the words and help of others can make a difference. Please post updates if you can.

    Thanks,
    Jacqueline

    Like

  66. Hi all –
    Not sure if my last post took as I was not logged in/ so it may post twice! But I found this site back when my son was 6 or so? We too were scared as everyone is – we saw several doctors some who said surgery was needed soon, and on our 4th doctor we found the right one. My son is now 9, we never did the surgery – mainly because his drift didbt seem that bad to me. It would go off for distance or if his vision was obstructed like if he was trying to look at something but an object blocked one eye- it would go off . But as he got older we were able to say, hey fix your eyes and he would. He now wears glasses for nearsighted / got those last year. I do see the drift sometimes still- like if he is on the computer or looking through a window but it just seems the same to me. We are in michigan – we saw 4 doctors all together- I did the patching too but it definitely is something you have to pay attention to- when he was 3 and 4 we alternated but I could tell the weaker eye – and I started to be concerned about patching that weaker eye for hours- I stopped patching the weaker eye and made my own patch schedule up of patching stinger eye for and hour or two, the weaker eye for only half hour, the stronger eye for half hour- our doctor told us it could be anytimg during the day – so we did it after school. I think the patching at the young age just helped force his to use it so that it stayed strong and he didbt lose vision. Now that he is older he can control his eyes on his own. We used to go every 3 months to the eye doctor and on our last visit, he said ‘see you in a year!’ I am glad we used our own intuition as well as taking in help from doctors but it is an unknown field. And it’s very true that us parents who are with them 24/7 are going to have to be very involved and see what works and doesn’t work for our kids . Also, get recommendations from friends / I didn’t know it but a friend at schools son had same problem and she was the one who referred me to her sons doctor – and it was because I was complsining I didn’t want to do surgery. And I really like this doc!

    Like

    • Hi Lynao. I know this post is old, but I was wondering where in michigan you were and what doctor your son saw?
      My daughter is dealing with intermittent extropia and is almost 3. She has glasses for nearsightedness and astigmatism which help some, but I’m worried about what they’ll say if it progresses. I am interested in finding the right doctor as I’m not sure we have the right one yet.

      Like

  67. I forgot to add that he has intermittent exotropia – diagnosed about 18 months, we did patching but at about 4 or 5 years we switched to only patching stronger eye- the patching worked and helped keep drift from getting worse. We stopped patching all together around 6 years and then if we would notice it more, we would patch again. At some point the doc said the patching had done all it could and at this point he was old enough for us to start telling him when it was off and he would fixit. Glasses helped too I think- I think he will just always have a slight drift if he is tired, watching tv, or looking out car windows. If it ever gets drastically worse then I would consider surgery for him.

    Like

    • Can you explain why your doctor said to do alternate patching? And is the drift just in ONE eye? My son only has it in one eye but the doctor said to do alternate patching which I don’t understand (patching good eye one day and patching the bad eye the next day).

      Like

      • Hi Stacey – the doc we saw when he was 18 months – 3 or 4 years old said to alternate patching because you want him to see double if his eye goes off- because then he will try to fix it. While they are young they can just ignore the vision in that eye – which is bad because then the brain stops using that eye and it gets weaker etc etc… So the patching both worked for awhile – we could tell he would notice then when one went off. – as he got older and the vision in his weaker eye was solidified – we stopped patching the weak one and only patched the stronger one – to try to keep it strong.
        He is 9 now/ we see it still and if he doesn’t fix it himself ill say – can u see ok? And then he fixes it – I guess that’s what you want them to be able to do. I don’t know that he will never need surgery- if there came a point in time when it was off alot and he couldn’t control or fix it – then I think we would opt for surgery.

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  68. I would recommed reading this book:
    Fixing My Gaze by Susan R. Barry
    Explains comprehensively why fixation is dysfunctional in some children and adults. Nicely written for the non-specialist reader.

    Like

  69. Thank you all so much for sharing your experiences. I have read back as far as 2011 on this thread and it’s so interesting to hear everyone’s different experiences with treatment for your children’s eyes.

    My four and a half year old son has intermittent exotropia, mostly in his left eye, but occasionally in the right as well. He has been seeing an Opthalmologist since he was 6 months old. They determined that he has 20/20 vision and binocular vision and is not a candidate for patching or glasses so they’ve been unable to offer anything besides monitoring. He had good control of the left eye but the condition has deteriorated somewhat in the last year and a half (coinciding with him dropping his daytime naps and his twin brother and sister arriving – she also has intermittent exotropia in the same eye.). He’s due to start school in September and we had him booked for surgery last month but I changed my mind a few days ahead of the date. We’ve had a few vision therapy appointments in London and the US but they weren’t able to do much because of his young age at the time. We have him booked for an initial consultation with someone very well respected in the vision therapy/behavioral optometry field this Wednesday. It’s £350 for a 2 hour visit. Does anyone have experience with vision therapy at such a young age or are we wasting more money? His Ophthalmologist is really against it and thought that he was a strong candidate for surgery but I really want to explore all sensible options ahead of that. Would appreciate feedback from anyone with experience of treatment in a child of 4 or 5 years old.

    Like

    • Hi Lisa – my son was similar – mostly one eye went off but the other would too if you blocked the vision in it. I would get second opinions – I saw 4 doctors total – the large strabismus clinic wanted to do surgery – then this other doc said lets try glasses and monitoring. His vision was 20/20 when he was 3 / 4 but I am nearsighted and we knew it was coming- lol. So he got his first glasses around 7 years old. I guess it depends on how much you see it. We saw it mainly for distance or when tired or watching tv. But for most part of day if he was doing stuff up close – I didn’t see it. I don’t know why they wouldn’t patch? It forced them to use that eye for 4 hours or so and increases it’s strength – they used to say for half a day but now they say it doesn’t have to be that long. I researched alot on the web and read articles from studies – I just see it enough in my
      Son to do surgery. Especially because it was intermittent.

      Like

      • Correction- I * didn’t see it enough to merit surgery…. I meant to say. So so far we are waiting and monitoring. But they say patching only helps until they are about 7 – it only works while they are young.

        Like

  70. Hello ladies, my little girl also has intermittent exotropia. She just turned 3 and we started noticing at 6 months. We looked up an PO in Orange County and have been seeing her ever since. She has not recommended patching or glasses as my daughters eye only deviates about 30% of the time on some days and her vision alone is fine. We have been doing exercises that we were told to do and anytime we see the eye turn outward we say “focus” and she realigns. I was wondering if anyone had anymore positive outcomes when it comes to vision therapy and no surgery? I am concerned she will be teased when she starts school or just playing with other children. I don’t want her to experience that. It makes me so sad.

    Thanks

    Like

  71. Hi Sheetal
    Not sure if you are stilll reading this but my 22 months old daughter also has I.E. And i wanted to know how yours is doing. Did you opt for surgery or she is doing ok on her own ?
    Thanks

    Like

  72. Hello everyone & thank you for taking the time to write your stories!

    My question:
    What happens when you stop patching for an extended period of time?
    Does the eye go back to the way it was? Or can patching really make permanent improvements?

    Thanks!
    Jacqueline

    Like

  73. Sheetal
    Not sure if you are stilll reading this but my 22 months old daughter also has I.E. And i wanted to know how yours is doing. Did you opt for surgery or she is doing ok on her own ?
    Thanks

    Like

  74. Hi Sheetal,

    How are you?

    I’m from India,Gujarat, and my 25 months old daughter also has the same problem. And I wanted to know how yours is doing. Did you opt for surgery or she is doing ok on her own ?

    Thanks
    Trupti

    Like

  75. Hi trupti she has not improved. but at home she not do much drift much , outside home she deviate lot. I am from boisar near gujrat. Mobile no. 8552963856

    Like

  76. I’m scared ladies my 9 month old baby was diagnosed with pseudostrabismus but I’m scared she might have the real strabismus ugh this is so hard for me! Please help me I’m so scared

    Like

    • Hugs Adriana! I know it’s a lot to take in and no one wants to hear that their child has any problems. Pseudostrabismus is pretty common and in most cases, isn’t true strabismus. If you’re worried, though, I’d take that intuition and get her vision re-checked (either now or in 6 months). If it is true strabsismus, I can honestly say that it’ll be ok and you will have caught it early and you will be able to get her treated, which is the most important thing. Just take it one step at a time. And please keep us updated on how things are going.

      Like

      • Thank you so much!!! She was diagnosed 3 weeks ago and they performed all types of eye exams including cycloplegic refraction and the ophthalmologist told me that everything looked great and I was soooo happy to hear that so I didn’t ask any questions and since then I see her eye wander here and there like when she looks to the side and very rare when she’s tired so the mother intuition kicked in I called for a follow up and she has an appointment on Nov 1st please have her in your prayers…

        Like

  77. Hi All,

    Last month we observed my 23 months old daughter is squinting. She used to watch Rhymes in laptop and mobile a lot.
    We took her to doctor but it was of no use he asked us to monitor her squinting and send him pic of her eye every month and after 6 months pay a visit to him. Post that if it worsens he said she might need surgery.
    We panicked and started reading all your posts and other links online. We found that it could deficiency of Vitamin A because of which mucseles become weak and sometimes Retina might be still strengthening in a 2 year old.
    So, we started home remedy. Daily 1glass of carrot juice and 1bowl of carrot +spinach rice and other fruits were her food menu. After a month now she has slowly reduced squinting.
    So, friends please try home remedy first before going for surgery.

    Like

    • So my baby Ellie’s pseudostrabismus changed to the real strabismus 😢 She was diagnosed today with intermittent exotropia I was so mad and sad at the same time….Dr told me he wants to see her in 6 months but meanwhile just observe it….

      Like

  78. Hi Kavita, Which carrot do you use in Juice Red or orange one ? As I understand , some days eye get drifted a lot and some days very little. Do you really see consistency in improvement ? just a query. Though I also believe that overall good health and good diet helps in many ways.

    Like

  79. Dear all, my daughter was diagnosed with intermittent extropia when she was just five months old. Since from then she is wearing glasses with no prism and patching eye alternatively. Now she is four and half years old . She is same as she was . Her drift is not purely outward it is slightly upward also. Not doctor is suggesting surgery.I want to know from each of you who’s kids went through surgery that what is the outcome of the surgery? Do you feel it is sustainable ? . would you recommend . Also let me know the outcome of vision therapy if anyone had experienced.

    Like

    • I just want to tell you what we did. Noticed my daughter’s squint at 6 months and she has intermittent exotropia. We took her to a therapist for vision therapy around the age of 2. They had us do eye exercises with her at home and there was no need to patch. The doctor recommended we choose a word to use with her anytime we noticed her eye drift so that she could regain her focus and make the eye stronger. We chose to say “focus”. Whenever her eye drifted, we would say “focus”. She is now 5 and I can honestly say she does it MAYBE 2xs a WEEK now. Sometime, we don’t see it at all. My husband just asked me the other day “have you noticed her eye drift lately?”. Not saying this will work with everyone. All I am saying is to try the therapy and pick a word to remind your child to try and regain focus with both eyes. It may work so you don’t need surgery. Email me if you have any questions. Best of luck.

      Like

  81. Wow, I just noticed under the user name of Reesesmom back in 2015 I posted when I started going to vision therapy and now 2 years later, my daughters eye will deviate MAYBE 10% a month! Therapy and the word to make her refocus worked for us. I am so grateful.

    Like

    • Im going to try as soon as my baby understands she’s turning two Jan 1st and I can’t wait to see her eyes aligned without drifting…she sees her ophthalmologist every six months…

      Like

  82. Hi Danielle.Thank you so much for replying back. That’s really nice to know that your daughter is getting better with vision therapy.May god bless her !!. could you please tell me little more about exercises that your daughter do in home. Do you also take her to Clinic for some special kind of exercises that requires special tools and techniques? May I have your email id please.

    Like

  84. Greetings to all of you !! May I ask to all those who have undergone surgery please let us know what they are feeling and if surgery is been helpful to restore vision and helpful in controlling eye drift.

    Like

  85. Hi everyone!! All who have opted VT as an option (with or without surgery )please let us know about their opinion on vision therapy . If possible please let us know what kind of exercises your kids do and also those that can be done in home.

    I would request everyone to please keep posting,give your suggestions and share your thoughts.This way we can help each other .

    Like

  86. My son has intermittent exotropia (now aged 2). We so far have not done any treatment. We have days where we barely see his eyes drift, some days it happens more often. It seems lately it is less often. We are taking a wait and see approach. But, importantly, I wanted to share my personal experience here. I realised that my son inherited his IE from me. I’m 37 and never until now did I know I have this condition! When I “relax” my eyes, when I am tired etc, I get “double vision”, which easily is restored when I again try to focus. Nobody has ever noticed this condition not even me! I am hopeful my son will also develop this “control”, if he isn’t already gaining it. Since discovering it, I can also voluntarily relax my eyes to elicit the drift. I feel quite reassured by how it feels and how easily I can redirect my focus and correct the alignment. I was quite concerned for how my son felt, but it really doesn’t bother me, so I am hopeful it also doesn’t bother him.

    Like

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