NOAH AOC

Hi,

I have a four and 1/2 month old with OCA.  He has blue eyes and his opthalmologist says the eyes are fairly well pigmented.  He is only just starting to develop Nystagmus over the last few weeks.   We don't see the opthalmologist until 17th December.  My son still doesn't appear to focus on things or really see things.  Over the last few days there have been several occassion where I think he actually looked at me and smiled (rather than smiling from hearing me) but it has not been consistant.  I can't really get him to look at things, although he does seem to get frustrated with me when I flash blcak and white image cards in front of his face.  I wanted to know when your kids started to see, what was it like?  Was it just little bits that got better?  Over what period of time was it and what sort of expectation should I have?  I am just really scared  and don't know what to expect. How did you know they were really seeing and not just responding to sound?

 Any help much appreciated:)

Ryker was about 3-4 months when we could tell he was actually seeing and focusing on objects. He started tracking black and white images around that age so we knew he could see them.  Our OT actually helped us find his null point in his vision and we started objects there and slowly began moving them.  I would say it was a slow process, it didn't happen overnight but it sounds like your son is starting to see the things you put in front of him.  We always made sure Ryker had something to look at where ever we put him.  I know exactly what your waiting for and how you are feeling.  It was absolutely wonderful when Ryker started giving us the eye contact we had been waiting for!  Hang in there and your son will get there when he's ready.  If you don't have him in it already, early intervention is very important so definitely look into that. This is a great site for support and ideas so keep in contact. Good luck and enjoy your baby, he won't be little for long!

Kelli

My son Andrew has OCA1b (we are assuming because of his coloring). He would not look at us either. At age 2 months, I said to my husband something is wrong. He went to a friend who is an eye dr and was  unoffically diag with OA. I called a Ped Opthal. she would not see him until he was 4 months. Because pigmentation can keep developing. At 3 months he developed  the nystagmus. We knew then he had it. My son did not look at me and smile at me until he was 4 1/2 months. Them all of a sudden he found his vision. He was looking at everyone. He started his early intervention at 6 months. It has been wonderful. Keep in mind babies with visual impairments (and it still makes me emotional saying those words) are delayed. My son did not roll over until he was about 8 months and he did not crawl until he was 9 months. He is 11 months now and he is all over the place. He will be 1 on Dec 23rd and I think he will be walking by then. I am in no rush, lol he is my second. I agree with Kelli, hang in there, it gets better.

 Andrew's EI (Early Intervention) teachers comes once a week. The first think she did was make a black and yellow mat for him to play on. It is half black and half yellow. She laid red toys on the yellow side and yellow toys on the black side. A lot of kids with albinism need contrast.  She also made him a really cool basket. I bought a low laundry basket. She attached the gymni rods to the sides of the basket. Cross over. Then she hung toys up. He balanced himself by holding on to the sides of the basket and could also focus on the toys and play with the toys. I brought that basket everywhere. It is hard enough bringing a baby to someone;s house who is not child proof, but bringing a VI baby is really bad. He loved that basket and I could visit with friends and family and have no worries. He has a safe play area.

Hope this helps,

Jill

Thanks it does help.  I think he was looking at me today again.  Not consistently but there were certainly times I felt eye contact and saw him smiling.  I got him to track twice (again it is not consistent).  Was it like that at the beginning for you?  Inconsistent, then built up to more often then not, then always IYNWIM?

To be honest it was real bad in the begining. I was crying everyday and just heartbroken. Both his teachers said he has verybad low vision. Once he reached around 8 months things changed. I think his body created more pigmentation. His eyes were a darker blue and his hair a deeper yellow. He rolled over and then crawling not to long after that. Now, he is great. He is ALL OVER the place. His teacher asked me yesterday, "why  am I here?" She thinks his vision might be abled to get to 20/70. I will take anything. I am so happy he is doing so well. I would have never thought this in the beigining. Everyone says it gets better, but when you know that is months from now, you just can't believe it.

I remember this frustrating time so well.  My son Zachary will be 4 next week (we think OCA1B because he has developed siome pigmentation), but when he was only a few months old I was so worried about his being able to focus and track objects.  Like Andrew's mom, I remember the day he looked me in the eye and smiled for the first time, and I knew he recognized me, not just my voice.  He was about 3 months old at the time.  From then on it just kept getting better.  It just takes time for their vision to develop.  A baby's vision keeps developing rapidly after birth.  In fact, I learned at the last NOAH conference that babies don't even develop their color vision unitl they are a couple months old.  That's why black and white, high contrast toys and books are recommended for the really little ones.  Hang in there, because in time you will know how well your baby really can see!

Elektra, our second with albinism, is also 4.5 months, and she shows no substantial signs of visual engagement, aside from my just having seen her seem to mildly track a penlight today, which was heartening. Thor, now 3, didn't start seeing much until his 6th month, so Elektra's progress is within my expectations so far, and I would say that applies to your son too.  It is pretty gradual - once Thor started to indicate some visual engagement, I made it a point to quietly smile in front of him until I was confident he was returning it based on sight - that was a nice moment!

Hang in there, their brains just have to catch up to a lot less visual information than it expects - it'll happen!

 Hey All,

 I can not remember exactly when my daughter  1st "looked at me" & reacted, but I can tell you, that they feel you and your love.  My daughter is now 14 y.o. and loves reading, game boy, and anything else I find hard to see!!! Was she a little delayed as a baby, yes, but you know what all kids are different, enjoy them!!!  I would reccomend contrasting colors, as been said, lots of black and white with red toys and lots of colorful books with different sounds and textures.  "These" kids learn to adapt to the world around them better than we could ever imagine, my daughter and her friends with OCA continue to inspire me!! Then, since they are now teenagers, they drive me crazy:)

vkargatis:

Hang in there, their brains just have to catch up to a lot less visual information than it expects - it'll happen!

I like the way you put that!

Jill

Thanks everyone for your replies.  We saw the Opthalmologist the other day, a Neuroligist and a Geneticist.  The opthalmologist says our son's eyes are quite well pigmented and his fovea fully formed.  He does not believe the albinism is OCA or OA in the inherited form.  He does believe our son has albinism just that it is not caused by a recessive gene. I hope that makes sense.   He said he would expect his vision to be better than it is at present. They all agree there is some sort of neurological issue impacting his sight but both feel that Owen will develop his sight just that it he has late maturation and it will take a lot of time.  They also feel he may overcome his issues and we should have optimism for his future.

Having said all that I don't think Owen is that far out of the ball park with developing his sight.  We can get him to look at things at times (which we never used to be able to do) and sometimes I feel he recognises me.  It is just not consistent.  I will keep hanging in there.

Thanks again for all your help.

I'm glad to hear your son is doing so well.  I'm not sure I understand what your PO said, though.  Albinism is always passed either recessively (when both parents carry and pass down the recessive gene) or it is X-linked and passed from the mother to the child.  But it is always inherited from the parents, not developed some other way.  Maybe I'm misunderstanding.  It is also possible that your son doens't have albinism, especially if his fovea is "fully developed" as you say, but that he only has congenital nystagmus.  Either way, you should most definitely have optimism for his future.  Owen will continue to amaze you as he grows and his vision develops.  His focusing and tracking abilities will improve with time.  Keep in touch.

Brittany,

It can be part of a syndrome which is caused by micro deletions on chromosome arms.  In these cases they lack pigment.  They have tested my son for a couple and he has come back negative.  I hope this makes sense:)

One thing my son loved when he was about 5 or 6 months old was a mirror in his crib. I remember crying in the aisle of Toys R Us debating whether or not I should purchase one. This was shortly after a visit to a pediatric opthamologist who had a rotten bedside manner. My son loved it. There was no greater joy than hearing him play with the little toys at the bottom of the mirror and finding him smiling at himself when I went to get him in the morning!

My boys are older now - college and high school- you are going to be amazed at the progression your son will make. My kids loved the little tiny legos and should've entered competition. They built the most incredible things ever with the teeniest little pieces (heck I could barely see them)

Funny, I've always had great vision, but as you know with age, our vision gets worse. I'm now asking my kids to help me read the back of the chocolate chip package so we can bake cookies together.

My son Elliott was 4 months when he was diagnosed. we noticed nystagmus at 6wks. He wouldn't focus on the light the dr. would shine in his eyes, he wouldn't even squint. We were so worried. At first the dr. said he would only see light and that nothing would improve. he's now almost 9months and can see his toys, just began to crawl, he pulls up, can see my face. he has about a good 3-4 foot range. the further away we get from him, the more he loses us. he gets really lost when there are a lot of colors or moving objects, but he's doing so well. he sees early intervention, they come to our home, and it's great! We love our little guy. He also has blue eyes. he has OCA type 1B. Blue eyes with some pigment in skin and hair. Genetics say my husband and I have some fluke in our genes.Hope all is well! I wasn't sure what to expect at first either. his vision therapist says that as they get older they learn to use thier vision more and more.

I talked to someone who said that the Genetics said her son has albinism, but not genetic. he said it was a fluke in one of her eggs. Never heard of it but i guess it's possible,