I asked Karla to write about her experiences with her son wearing glasses for protective purposes: because he has very low vision in one eye, he wears glasses to protect his sighted eye. You can see a picture of her son in the previous post. Many thanks to Karla! – Ann Z
Caleb’s Story
I suspect Caleb’s story of why he has glasses started in a similar manner as that of most little ones with glasses. It really didn’t seem extraordinary, little did I know what was to come. A snapshot of him sitting for the first time at 5 month show his eyes looking a little hinky. A quick visit with our friend and family optometrist landed us at a pediatric ophthalmologist in short order. Quite frankly I was quite unconcerned I figured he had a large prescription or maybe something a little more serious, like strabismus. I figured we would be doing glasses and patching and I was calm because I was sure we would be able to work through it.
Well, I was right Caleb does wear glasses and patch but for reasons very different than most kiddos who do the same. Turns out Caleb has a quite rare condition in which fetal tissue was left in his eye during the 7 month of gestation. He has a small cataract with a stalk of tissue connected to the cataract that goes through his eye and wraps itself around the optic nerve. The diagnosis which we ended up getting from a retina specialist, after consulting with his partner, is Persistent Fetal Vasculature in the past it has also been called Persistent Hyperplastic Primary Vitreous . We were told there would be low to no vision in that eye, but the other eye is just fine. Surgery is not an option because all doctors involved feel that in this situation the risks outweigh the gains.
So why glasses and patching?
Our ophthalmologist told us that recent studies show that people with monocular vision are more likely to be injured in their one seeing eye that those who have binocular vision. She told us that we would need to put safety glasses on Caleb at sometime. She then asked our about our family and when she heard about the young boy domination in our family she thought glasses would be good right away. Another reason for the glasses is many kids with retinal damage stimulate their eyes by pushing on them. The glasses prevent him from doing that. We patch Caleb 2 hours a day to prevent atrophy, to see if we can teach him to use that eye some, and to preserve as much normalcy in the appearance of that eye as we can. We do not patch in hopes to regain vision.
Where we get support
Truthfully, I have not found many on line sources for Caleb’s particular brand of eye problem. There are some on line support groups specific to his syndrome, but his presentation of PFV is not typical. Some general websites I have found helpful are:
- LostEye – Discussion and support for those who have lost an eye to whatever cause or have monocular vision.
- FamilyConnect – For parents of children with visual impairments
- National Association for Parents of Children with Visual Impairments
But, my greatest resource did not come from the Internet, it came from the early education program in our town. First, I had to take a big gulp and call to inform them that I had a child that was visually impaired. Ouch, just saying those words still hurt sometimes. Caleb actually will probably develop just fine but since he is technically visually impaired he can receive services from the early ed program. Caleb has a teacher whose goal is to know exactly what he sees and what accommodations he will need by the time he enters preschool. I have gotten advice on patching, and keeping his glasses on and have been loaned items to make us more successful. Caleb also receives patch samples, as well as all of his glasses and lenses until he is three, through that program. Our ophthalmologist also does clinic there once a month so that she can communicate with Caleb’s team and they can set goals and discuss what they think he sees together. My biggest word of advice for parents of children with monocular vision is to call your local school district or early education program and see what programs they have to offer your child. You just don’t know what you will find, your community may also have an amazing set up for the visually impaired like ours does. I would have never known if I hadn’t called.
Success in Patching and Glasses
How do we keep glasses on a child when he sees no benefit to wearing the glasses? I have no great answer. Somehow, Caleb accepted the glasses pretty readily. I think it helps that we have another glasses wearer in the family. My best advice is to make sure you get something that is very comfy and don’t give up just keep putting them back on. Mimicking his teacher, we always say “Glasses on!” in a cheerful voice while we put the back on. We do the same when we patch we say “Patch on!” as we put it on. We just try to make his glasses a very positive thing. I also have little helpers who have been instructed how to put the glasses back on, so that I am not the only one doing it.
Have you ever been at a show when a person with a large hat sits in front of you and you can see the sides of the show but not the middle? I imagine that that is probably what Caleb sees when he is patched, but fuzzier. Through his teacher we have discovered that his affected eye can see much better when things are contrasting. That means for patched play time we set him on a black mat with light colored toys. When he is patched and eating we place a black colored mat on his tray and use light colored food. We also have a safe place for Caleb while he is patched. A place that he can play in that has been blocked off from all the other wild and wriggly beings in our household. These things have really helped us meet our 2 hours of patching a day. All these tips are simple things that I would have never thought of had it not been for our early education program.
Children with monocular vision will likely grow up and lead productive and healthy lives. It is important for me to continue to remember that as we wade through this time. I am thankful for the support I have while we do it.
For Little Eyes 
For the past 25 years I have worked for an attorney whose son has been legally blind since birth. If you want to be truly inspired, google Richard Bernstein or go the the website sambernstein.com. There is almost nothing Richard can’t do other than drive a car or fly an airplane. He recently ran for the Democratic nomination for Attorney General for the state of Michigan. He runs marathons, and has even competed in the Iron Man competition. He is a true inspiration to everyone. I am sure Caleb will be able to do whatever he wants to with your support.
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Thanks, for your encouragement!
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Great way to tell your story and offer advice and support to others experiancing somthing similar to baby Caleb’s situation!!!!
Thanks for sharing Karla!!!
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Thank you for your post! My almost 4 mo. old was diagnosed with a cataract and PHPV at 1 month. She had the cataract removed at 5 weeks and is being patched every other day and wears a daily contact lense. No glasses yet, but the doctor did say he wants her in glasses to protect her other eye (which to this point is perfect, yes!).
While her doctor is great, he hasn’t given me a great deal of resources or support groups. I have gone out on my own and found two resources offered in Georgia.
My daughter is struggling with motor skills on days she is patched. It is almost like having two different babies! She is totally on track when not patched, but is like a newborn when patched. It is very hard, but I keep reminding myself that there will be a finish line. I don’t ever want her asking me why I didn’t try everything!!!
Thanks again. While I wouldn’t wish this journey on anyone, it is nice to know I am not alone!
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Thanks for posting Ansley’s mother, I’m glad you found us. I can only imagine just how hard it is to patch your daughter, I really admire your effort. Please keep us updated on how things are going!
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Dear Ansley’s Momma,
Isn’t it frustrating to be the mother of a child with something rather rare. Or at least rare enough that it makes forming a support group rather impossible. Have you joined the face book group “People with PHPV unite”, it is not that busy but you can get a little support from there as well as the PHPV Yahoo group.
Patching Caleb about breaks my heart because like your little one he takes gigantic steps back when patched. Using high contrasts like black and white made a startling difference for us. Does Georgia supply you with a vision impaired teacher? I am so grateful for ours.
Today we had an appointment and the Dr. just raved about how much she thinks patching has improved the alignment of the eyes. And he seems to be working harder to use his PHPV eye. It was just what I needed to remind me why we patch.
I look forward to hearing about your daughters progress. You are not alone in your battle against PHPV.
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Hi Karla,
Thank you so much for posting your son’s story. My son also has PHPV and after googling for hours your story is the first thing I have found that isn’t just some medical site telling me what it is.
How old is your Caleb now? My son Cooper is 10 months and was diagnosed at 4 months and just like your son the doctors decided no surgery for the same reason as you. We have been patching every day for an hour or more since and at first it was fine but I’m now finding it extremely difficult, he cries the whole time he has it on, I feel so cruel! However after reading your ideas about the contrasting colours when patched etc I will definately try this if it will make him happier with the patch on. I also found interesting that I have brought glasses up with his specialist before and she straight away said no they won’t help but after reading your story I think I will ask again at our next appointment.
Thank you again so much, we had a particularly bad morning with patching today so reading your story has lifted my mood greatly!
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Claire,
I am so glad you found my story. My son is 15 months and has been wearing protective lenses since about 8 months. There is no script in them right now but will change soon as he good eye will be getting a small prescription eventually we will try a script on the bad eye as well but it changes wildly right now so it is no use in putting one in. His bad eye went from-3.5 to 0 to -1.5 in 6 months. This may be why the doctor says no glasses. Because the prescription can change so much in PHPV eyes. Also my sons lens is only barely affected his bigger problems are in the optic nerve. One of our doctors said glasses at elementary school age for protection but our primary ophthalmologist is much more into prevention and since Caleb is the youngest of 3 boys I am right alongside of her on that.
Caleb, too, has become more fussy with patching but I keep trying and experimenting. Caleb’s teacher from early intervention recommended that I wear very dark clothing when he patches so that he can identify me better from our surroundings that seems to help. But this is the crazy thing. I can put a patch on Caleb and drop him off at MOPS childcare or at nursery at our church and he does 100% fine. I have spied on him because I didn’t believe what they told me but he plays and talks and walks around. And keeps the patch on the whole 2 hours. But at home he whines and fusses the whole time. And starts peeling the patch off at about the hour mark. So we rarely patch at home anymore we patch at stores, parks, church and when we are out and about this seems to distract him and suits him much better. I think like with all things patching will have good seasons and bad seasons. Continue the good work I know how hard it is.
Our state provides us with an early education teacher based solely on Caleb’s diagnosis. You might look into that, we now see ours only quarterly but she is a sounding board who I can call when we hit rough spells or if I have questions. PHPV is a bit of a lonely diagnosis because of it’s rarity and it is nice to have some one to chat with about it in person.
There is a yahoo PHPV group and a PHPV facebook page that would be worth investigating as well. Most of the people there have gone the surgery route but they are good place for questions as well.
I am so glad I was able to bless you with our story.
Karla
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Thank you for this post. My Daughter has just been diagnosed with Persistent fetal vasculature. I would really like to correspond with Karla if I could. Please let her know my email. Shellbell9588@yahoo.com
Thank you all so very much.
Michelle
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