NOAH AOC

My daughter, Sophie, is three months old. She was diagnosed with nystagmus & ? ocular albinism.

I am still  in shock stage.  I am scared to death of the unknown.  The thoughts of something being wrong that mommy can't fix is devistating.  My ped. is sending me to a PO but my question to everyone is- How do I find a PO that knows anything about ocular albinism.

I am still in the beginning stage, so I don't know a lot except that she has side to side nystagmus and she has white eye-lashes.  I have three older children who were all born very blond but I noticed her white eye-lashes before she was diagnoced. 

Her Dr. just said she had OA. and is sending me to a OP, but don't I need a OP that specializes in albinism.  And How do I find specialist in my area, which is cental Alabama

Thanks to anyone who can give me any help.

Angie from Birmingham

does she have white-ish blonde hair as well?  If so, it is possible that she could have OCA... which effects the hair/skin as well as the eye's.  

You will find alot of info here on this website, and alot of support from other parents who have been through the same thing you are going through now. .  

I would think that finding someone who "specializes" with albinism would be VERY hard.  I would ask the PO if he/she has treated anyone else with albinism.  Even if she is their only patient they could still be a great PO.  The most important thing is a good communication between you and them. 

I can remember being in the shock stage.  Just remember that we have all been there at one time or another.  The great thing about these boards is that someone here can relate to just about any and all situations you might find yourself.  Even if its just needing to vent about stupid people, we're here for each other!

Welcome to the club.

We found out that our daughter has OA at 3 months too and I can remember the "shock stage"!  She is now 15 and we just went to get her permit.  It was very difficult for her to see the numbers for the vision test and she just squeeked by but can not drive at night.  This was something that we couldn't even think about when she was a baby and now is here in our lives.  My son also has it but has a lazy eye too.  We have a wonderful doctor but I think it would be hard to find someone that specializes in OA so just make sure they are a pediatric doc and stick with your "mom" instincts.  At first, we went to "the best" because he was the head at the opthalmology dept. at Children's and he turned out to be horrible!  It took us 3 doctors to get to the perfect one for us so hang in there!  Don't forget you are your child's advocate and know what is best for her.  Both my kids have done done things that people told us was not possible for them to do.  We never believed that and always told them they can do whatever they want to.  My son plays all sports imaginable and both kids do excellent at school.  It is possible for your daughter to be an honor student, play sports and lead a fairly "normal" life.  When things come up where their vision is an issue, you will find a way to deal with that issue.  The hardest part is getting people to understand and help them with what they need so you just have to tell them and they will do it.  Good luck and keep thinking positive!

First of all let me tell you you have won about 1/4 of the battle by finding this web site. My 8 month old daughter Danikah was diagnosed with OA at her 6 month check. Then my 3 year old was diagnosed because we took her in because of my youngest.  We noticed something wrong with Dani's eyes at 8 weeks but did not get the final diagnosis til 2 months ago. I am still "floundering" a little, but i am getting so much better with it all. Please e-mail me if you want to talk and i will give you my home number and we can chat sometime.  I live in Ohio so dont know much about your area, but we can kindof walk thru this together.  My prayers are with your family as it was all too recently we went thru that "scared to death" stage. Trust me it gets soooo much better. 

Rebekah, mom to Elainah with OA - 3 yrs old, Kylah 1 year old, and Dani with OA 8 months old

Hi, Angie,

Our Sophie was also diagnosed at 3 months with albinism.  Now, at almost 6, she's this amazing kid who does everything her peers do and more.  Most people don't even realize that she has a visual impairment.  Hang in there and read through some old posts.  You'll see how everyone has been in the same position as you are and all I can say is to take each day at a time and you'll be amazed at what each passing day will bring from your daughter.

As far as your doctor's appointment, you should be sure to see a pediatric ophthalmologist (PO).  A good place to start would be your closest children's hospital.  Chances are that they have seen children with albinism before.  That's what we did after we had a terrible experience with the first PO that we saw (among other things, he misdiagnosed her with OA which is generally not found in females; she has OCA which affects the skin, hair, and eyes which sounds like your daughter as well).  Thankfully, we had a much better experience when we sought out a second opinion; after visiting this doctor and discovering NOAH, things have been easier ever since.

Good luck and remember that any time you have questions, the NOAH message boards are always here. :)   

Angie,

 I remember the shock stage very well!  My son, Frankie, is 22 months and has OCA; white hair, skin, low vision and nystagmus.   It was very hard in the beginning, but you do get through it and it gets so much better!!  And the vision improves.  Getting involved with NOAH was great for me and meeting other people in my area with kids with albinism.  Is there a school for the visually impaired near you?  My son is doing so much better now, it is amazing in just a year how much they improve. 

I have many online resources on my blog: http://albinism-susan.blogspot.com

Please keep asking questions!   

Hello,

My daughter who is now 8months old was diagnose with OA when she was three months old. I know the feeling of the shock. But I got on the internet and looked up everything I could and I found the NOAH web page. Let me tell you that it is wonderful. I have had so much help here. I love all the parents here they are wonderful. Bethany is doing great we have a great doc. He has seen  and worked with it before. I live around the Amish community. He says it happens alot in their communities. I would just see what your ped doc says and go from there if you don't like what that doc says then you can all ask him to refure you to someone else. Always go buy what your gut says. Bethany will be getting her glass in about three weeks to help with her eye sight. I just took her to the eye doc last monday and he was really happy with the way her nystagmus has gotten better. It is great to see in just a few months she has come great way.

Angie,

Oh, I know along with many others exactly how you are feeling.  I didn't know where to go and even what the next step would be. Ryker was diagnosed at 2 mos and is now 18mos and doing so much more than I ever thought.  I heard the words low vision, legally blind, and all those other scary words and wondered how in the world is he going to learn to do anything without me being right there to help him.  As of now, Ryker is so independent and doing everything he's "supposed" to be doing at his age.  I would recommend getting in touch with an early intervention program through your school or hospital.  Ryker's therapist helped us find his best vision at a very  young age and gave us support and ideas on how to help him use his vision.  This website has given me hope and support.  We are all here for each other and don't be afraid to ask anything!  Welcome!

Kelli

Hi Angie!!

I think we all found out about 3 months! It was a shock to me too! I am thankful for the board so I can find a lot of answers I've needed over the years My ds Jacob is 9 now!! I just want you to know we are here for you! We can answer questions when you have them or even if you need a shoulder to cry on!!

-x-

First of all thank you all so much for your encouraging words.  It made me feel so much better just to read the replies.  I know I have been very emotional for the past couple of days since I found out, so to read about other kids who are doing so well got my tears flowing again. I do feel very blessed to have my daughter and I know God has big plans for her.  I am very relieved and excited to have this group for support.  I pray some day I will be able to encourage someone else who is going through this scary and confusing time with a great report on how my little angel is doing.

Thank you and God bless all our little miracles.

Angie and Sophie