Looking for resources/answers about Ocular Albinism

[KLM99]

My 4mo was just diagnosed with Ocular Albinism (OA). My father has it too, so I'm pretty familiar with the symptoms it causes, but still a little bit in shock I wondered if there are others with sons with OA who could share their experiences.

*Did you do anything special with your child (vision therapy, special games, etc)?
*How have you prepared your child for dealing with possible social issues?
*Is your child able to live a 'normal' life (driving, playing sports, etc)?
*What challenges have you had to deal with due to OA?
*And purely out of curiosity, what are the eye colors of your sons with OA, sisters, and brothers without OA?

I guess I'm just used to being able to DO something and with this it seems like it just IS and there isn't anything I can do to help. Maybe that's true, but I'd love to hear about how others have dealt with issues that may have arisen. Thanks!

[Satori]

Have you checked out http://www.albinism.org/publications/ocular.html ? My dd has Macular Hypoplasia which causes very similar vision issues as both have the underdeveloped fovea which messes with acuity and glasses can't fix it. My dd did the follow the voices thing more then look at faces when she was a little baby but now at 3 you wouldn't know she has vision issues even though a retinal specialist, PO and plastic surgeon all assure me she does. The problem was discovered when she was 5 weeks old and I realized her eyes were reflecting white light instead of red eyes or normal colored and there was worry about cancer since I had a cousin who had it. Anyway the only problem at this point is it causes light sensitivity but thats an easy fix with sun glasses and we had to darken the back car windows as the sun light bugged her a bit and at night the passing car lights made her scream bloody murder. A friend pointed out the problem and once we darkened the windows the screaming stopped so basically protect the eyes from bright lights and your good. I'm wondering if her vision issues will become more apparent once she starts school though since she doesn't really need good acuity at this age to do things.

ETA: My dd did receive vision therapy from some agency who's name I can't remember but it was like a sister agency to Blind Babies Foundation, I didn't really see the point in the therapy but dd seemed to enjoy it and they were able tell me which spectrum colors hurt her eyes the most (yellow) so we could avoid them.

[askew]

My 3 year old has congenital nystagmus, originally thought to be OA but then ruled out. I don't know if your son has nystagmus with the OA, but we belong to a yahoo group for kids with nystagmus and a good portion of the families there have OA or OCA. They are very good about answering questions as well.

http://health.groups.yahoo.com/group/ann-list/

[KLM99]

Thanks for the help! Those are both great links

[Lollybrat]

I wrote a short reply in your other thread, but I'll give more info here.

My son is 5.5 and was diagnosed with OCA (oculocutaneous albinism) a few months ago. It has been suspected since he was 2, but he would not cooperate for the full eye exams until recently. My son also has Autism Spectrum Disorder, which makes the examining him a challenge. Luckily our PO is very skilled and very patient.

DS has some complex vision problems including:
High Hyperopia (farsightedness)
Extreme Astigmatism
Mild Intermitent Strabismus
Bilateral Amblyopia
Photophobia

DS has been wearing thick glasses to help with his farsightedness and astigmatism since he was 2. He has Transitions lenses to help witht he light sentititivity and he weas a ballcap whenever he goes outside. His best corrected vision is 20/60 with glasses, which is actually pretty good for albinism. We're not sure about his depth perception yet, but just from observation he does appear to have problems with that. He also sometimes talks about seeing double.

Now that the PO is certain of the albinism diagnosis, we are tying to sort out just how DS sees and how his albinism interacts with his other developmental issues. For example, DS as dypraxia as a feature of his autism. This is a motor planning disorder which causes gross and fine motor skill delays. Obviously these delays are going to be more difficult to overcome if DS has problems seeing what he is doing or seeing objects in his environment. Another example is like many children with autism, DS has a hard time recognizing and understanding other people's emotions. But if he cannot clearly see other poeple's faces, it will be even more of a challenge to teach him this skill.

I can't really answer your questions about social aspects and "normal" life because for us the ASD is a much larger factor than the OCA in these areas.

DS is in an Autism classroom at school, but the teachers and therapists are aware of his vision problems. They make adjustments for him as needed, including larger font on worksheets, keeping graphics simple, taking care to reduce glare, and allowing him to wear his ballcap at recess. It's a challenge becuase DS is primarily a visual learner, yet he has a mild visual imparments.

DS is very active and loves playing at the park, swimming, sledding, etc. He enjoys playing board games. He has been able to read since he was two, before he could even talk (Hyperlexia, another feature of his autism). He is a natural reader and can read almost anything, but by the end of the day he often shows signs of eyestrain and fatigue so we need to careful about that.

As for coloring, DS has very light blue-grey eyes. His hair is a dull yellowish-ash blonde. His skin is very very fair, like a white bedsheet. He is our only child, so no sibings to compare to. I myself have grey eyes, light brown hair, and fair skin (not as fair as my son). My husband has dark green eyes, dark brown hair and an olive skin tone.

[pwit]

my two oldest 4yo and 2yo have albinism Very typical kids. I don't expect them to ever drive but other than that I think they will live a normal life. we have some info about our families experience with albinism on our website although it needs updating www.chrisandabby.com

[Satori]

oops! posted in the wrong window, meant to start a new thread and didn't realize I was replying!