NOAH AOC

I have only known for three days that my daughter has some type of albinism.  I was told by her doctor that she has OA but from what you all have said I believe it is OCA.  Now my question is about her nystagmus.  Does it get better or worse as she gets older?  Is there any treatment or surgery suggested for it?  The nystagmus and how it effects her vision, and her vision in general is our main consern right now!  What can I expect from a three month old with side to side nystagmus and, untill I know for sure, probably OCA.  Still Very nervouse and unsure of her future, any advice and/or information would be greatly appreciated.

God bless and Happy Easter,

Angie and Sophie, from Birmingham.

Angie,

First of all congratulations on your baby and welcome to NOAH!!!  Both of my kids have OCA1b and were born with Nystagmus.  Their nystagmus has lessened over time.  My daughter is almost 4 and the only time you can really tell she has nystagmus is when she is tired.  Her eyes do move faster at that time.  Our pediatric opthalmologist explained to us that nystagmus doesn't effect their vision near the way it would if say a person without nystagmus would all of a sudden one day just develope nystagmus because a person that has always had it doesn't know any different.  She said if you just all of a sudden developed it you would virtually fall over.  I hope this little bit of information helps you.  If you ever have any questions there is always someone here on the NOAH boards that are willing to help.  

God bless and Happy Easter,

Thank you Candi. 

 Thank you all so much.  Getting on NOAH and reading about other people going through this and getting the most kind uplifting responses is really helping me get through this initial heart break.  I know everything is going to be okay.  I have the most amazing little gift from God, I just want to be as educated as I can about all this.  Without NOAH I would still be in the dark having a nervous breakdown.  So thank you so so much.

Have a blessed Easter day and thanks again,

Angie mother of Allie, Grace, Nate, and little angel Sophie with OCA.

They nystagmus gets better as they get older b/c the muscles get stronger and can "slow" the movement down.  That is why it seems to be worse when they get tired or run down.  Jilly is 8 and this is VERY true.  Somedays you can't even see them wiggle.  It is why their vision also "seems" to get better when they get older.  The numbers really don't change but they can focus on and image longer when the nystagmus is slower.

There is usually a "null point" where the vision is the best.  That is why some people turn their head kinda funny to read and such.  Jilly hasn't shown this but I always watched so I could point it out to her.  I figure if she didn't know she was doing it and I said "hey if you look this way can you see it better" it might help her figure things out.

Angie, the thing I've found so far is that you just have to "wing it" with Sophie just like you probably did with the older kids.  You know, figure out what works best for her.  Some kids like to have routine some dont, some need long naps some don't.  The same holds true for a kid with albinism.  You'll find yourself just doing things and then think..."Hey, I do that b/c she has trouble seeing"  You don't even know you are doing it at first.  Some of the stuff that I did without knowing it where...saying "step" everytime we were walking around, holding hands with her behind me in bright sunlight so she would be in my shadow, or even using ramps instead of stairs b/c they are easier.  In other words you just parent the child and everything will be just fine!!

 I'm glad you are here doing the research and hope we can help ease your fears!

Very good advice so far!  I'd also like to welcome you to NOAH!  My son Zachary is 4 and we think he has OCA1B because of his coloring.  I remember when he was 3 months old and I had first gotten the diagnosis.  This board is what got me through the initial worry and fears!  Yes, her nystagmus will improve with time.  There is no treatment for the nystagmus per se, but as she gets older you will want to monitor her along with a pediatric ophthalmologist for any refractive errors like nearsightedness, farsightedness and astigmatism.  If she has these, your PO will probably recommend glasses to help her develop the best vision possible.  The PO will also watch for any eye turn (strabismus) which can cause amblyopia (lazy eye), meaning the brain is ignoring the message from the weaker eye.  If this happens, the PO will probably want to treat the amblyopia by patching the stronger eye or using an eye drop to blur the vision in the stronger eye so that Sophie will learn to use her weaker eye better and hopefully develop the best vision possible in each eye.  There is also eye muscle surgery to correct the strabismus (eye turn) and also surgery to slow the nystagmus, but that's a pretty specialized surgery and has been discussed all over this board recently. 

I know all of this is overwhelming, but take your time and just love her like your other kids.  She will be fine!!

Hey Sis,

Just wanted to let you that I found it. Everyone on here seems really nice. I have learned so much already, and I have only been on here a few min. Well I am gonna go read some more.

I Love You,

and thanks to eveyone here!!!!

Andrea

Hi Angie,

I am glad you found NOAH and the webboards.  My son is 22 months and has OCA1b.  His nystagmus has gotten less so far.   Sometimes he tilts his head to see better far away.  But he is doing much better overall.  The beginning is tough because you don't know a lot about it, but it get easier and the kids do really well!

Hope you had a nice Easter!