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
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.