Thursday, February 9, 2012

Answers

In all of our research into finding out what could be causing Liam’s nystagmus we ran across several conditions that could be our answer.  We quickly began asking for referrals to different specialists and departments to start the process of eliminating each, one by one.  Brian and I sat down one night and discussed them all and what we would do for each possible one, and I vividly remember praying and telling him and God that I felt we could handle anything as long as it wasn’t Ocular Albinism (because of how much worse I knew Liam would be in for with his vision if it were OA).  BUT, I have learned that God doesn’t always ask us before he deals the cards, he only promises that he will never give us more than we can handle and that he is with us always.  So when the words “your son has Ocular Albinism” flew so easily out of the ophthalmologist’s mouth, my heart just dropped to the floor.  I knew this meant Liam’s vision was going to be a lot more difficult than just his nystagmus but at the same time, part of me was at peace knowing we FINALLY knew its cause and what was affecting our child.  Most importantly, we now knew how to HELP him.  We finally had some answers! Now, because of my refusal to accept the possibility of OA, I had not researched it nearly as much as all the other possibilities.  When the doctor left us for a few moments we quickly took out our phones and researched to find what questions we needed to ask.  Dr. Dimiceli (our ophthalmologist) was very patient answering all of our questions and because Ocular Albinism is genetic (meaning it was passed on to Liam somehow and can possibly be passed on to our other children) she got us a referral to the Arkansas Children’s Hospital Genetics Department to find out which of the 4 types of OA Liam has.  She told us it would be important to cover his eyes from the sun as it could/would be very painful, to a degree, for Liam and until he could tell us just how much, it would be best to cover them with sunglasses.  She could also tell from the discoloration in Liam’s fovea (part of the back of his eye) that there was some vision loss that she wanted to try and correct with glasses.  So Dr. Dimiceli tried a few lenses and came up with a prescription for infant glasses called Miraflex (basically indestructible) for Liam to wear. (Which we had made with transition lenses so we wouldn’t have to constantly remove them and replace them with sunglasses when we go outside, instead they will automatically change when he gets in the sun or bright light.)  She told us Liam’s case could be mild because of how few clusters of holes there where in the pigment of his iris but we will not know for sure until he is older.  She confirmed that besides following up with genetics (because one or two types can come along with color or night blindness and deafness issues) that we as parents were doing everything for him we were supposed to be doing and that she would be following him closely every 3-6 months until we nailed down a good prescription for his glasses.  Now there is currently no cure or treatment for OA or Nystagmus but there are some great test studies being done to try and heal or replace the pigment in their eyes to restore as much vision as possible.  Hopefully/Prayerfully, 10 years from now or so there will be a cure.  As for now, we will continue to do Liam’s vision therapy and follow up with genetics in April but we are finally relieved to have some answers to share with our family and friends.  I’ve added a page above on our site for Ocular Albinism that has general information for the disease that I’ve collected from other sites to really explain what the disease is, and STAY TUNED—we get Liam’s glasses in next week and are having a photo session to show them off! Will post pictures soon! I've also posted a video from google on our videos tab (see top) for an idea of how someone with Ocular Albinism and Nystagmus see. (Warning: it can be rather upsetting to watch!)

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