NOAH AOC

It went very well today. Andrew wasn't fussy at all which helped so much since everything took so long. She confirmed what the eye doc said about him having Ocular Albinism. She said his right eye is 2.75 and his left is 4.75 and he is far-sighted but she doesn't want to prescribe him glasses until he's older so we go back in May to see how much (if at all) his eyes have changed. Does anyone have suggestions on activities I can do with him to help him focus better up close? And even though it's winter should I start getting him used to sunglasses now? He is 4 months.

I'm glad to hear your appointment went so well!

Caroline (almost 8 months) has been 'practicing' with sunglasses since she was diagnosed. Her first PO recommened that we start right away. I had a hard time finding ones to fit her when she was so young and now that they fit her she won't keep them on for long. One positive about it being winter is that I can cover her hands with mittens and she can't pull sunglasses off as easy- so they stay on a little longer. I put them on her everytime we go outside (along with a hat). She pulls them off, I put them back one, she pulls them off, I put them back on....eventually she will get it  

Have you looked into early intervention in your area? A diagnosis of albinism is usually enough to autmatically qualify for services.

Caroline loved high contrast toys (Sassy makes great ones) and toys that had lights and sounds at that age. If you look back at previous posts you can find lots of tips.   

Hi,

I am a new member to this forum and this whole disease.  My dad had OA and I hadn't really known much about it till I found out my second child was a boy.  I was a bit nervous the rest of my pregnancy and tried to push it to the back of my mind.  Eric was born 10/2/9 and of course the most adorable little bundle of joy.  I noticed the nyastamus very early on but just prayed it would improve.  He does focus on my face and smile but now at his 4 mth check up they rushed us to the pediatric opthamologist for his first exam.  The diagnosis, OA.  Now I am reading everything I can and looking for any info on early intervention and stimulation I can do for him to give him the best sight he can have.  I need to buy some baby sunglasses so I am off to find some with a strap, I think onestep ahead but any direction or info anyone can supply on what to do would be great.  I live in NJ as well and just am confused where to start.  I joined NOAH and bought two books off their site....

I am new to Albinism too.  My son is 10 1/2 months old and just got his glasses.  We started with sunglasses right away.  He is pretty used to them now.  The snow is so bright when it is sunny so he is happier when we have to go out.  Any toys that light up or have high contrast are good.  Get into Early intervention right away.  It all helps!!  Good luck!

Thanks Riley's mom,

I have ordered my glasses and a sun romper for the summer:) I also called and got set up for early intervention.  Gosh thhere is just so much to do but I am so thankful this site is here and that atleast there is a place to ask questions.  The eye dr gave us this outdated pamphlet on albinism with pictures of kids from the 70's lol.  I think a manual on what to do first would have been helpful but this forum is proving to be just that.  Thanks a bunch for your thoughts and suggestions:)

I live in NJ too. You want to call your County special services for a TVI from the county and also call the Commission for the Blind and they will also send out a TVI. Your county TVI should come out one hour a week amd the commission comes out evry 6-8 weeks. The commssion send out really cool free toys!!! You can call Children's specialized hospital as well and they can direct you. Our County TVU came from there. My husband is also a licensed optician, so if you have any questions about glasses he can answer them. He has learned a lot with Andy!

I am sorry I am new to all of this but my son was just seen by the eye docor and he is 4 months and they said he has OA.  What is PO? 

PO is a pediatric opthalmalogist. My eye doc referred me to one after he confirmed my son's OA. Did yours give you a referral? This forum is great with helping out with any questions and concerns you might have. My son is now 6 months and has nystagmus along with the OA and I have learned a lot here. Having a child with albinism is quite the learning experience!

We got a referral from the early intervention caseworker since the PO we were referred to by our pediatrician wasn't the best.  We will see the new PO next month.  Definitely great to get signed up for Early Intervention!  They send at OT was a week and we also have met with Barbara Horner from the Commission of the blind.  She will come out every 6 weeks and she also will advice the OT so we do everything we should be doing at this time.  Erics eyes are getting better with tracking but he does indeed continue to present with that back and forth roving nystagmus(as the PO referred to it)  If you have questions feel free to post or email me at jena.feiner@comcast.net.  Definitely great that we have kids so close in age, we can learn from eachother!

Hi, Jena,

We're in NJ also and have a daughter who's almost 8 with OCA.  I'm not sure where you're located but I wanted to let you know that our PO is from CHOP (Children's Hospital of Philadelphia) and she has a satellite office located in Princeton.  If you're looking for a new PO, her name is Stefanie Davidson and she's knowledgeable about albinism and has been great with our daughter.  We originally saw a different PO from CHOP and when she left CHOP, we switched to Dr. Davidson who trained under her and have been very happy.