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  #1  
August 23rd, 2007, 06:09 PM
Super Mommy
Join Date: Jul 2006
Posts: 924
Hi,

I already left a post! My name is Sara. My daughter Ryleigh, who will be 4 months September 3rd, was diagnosed with congenital nystagmus almost 2 months ago. If you read my post under Brandi's Nystagmus posting you can get my story and experience. I never knew this forum was here but I am really glad I found it. I have been struggling silently with all of this. My friends offer wonderful support but it is something you can't really understand until you go through it yourself.

Look forward to getting to know you all!

Sara
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  #2  
August 24th, 2007, 08:15 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Welcome,
I just found this board recently too. My daughter has Septo-optic dysplasia (a more severe form of optic nerve hypoplasia, where at around 6 weeks gestation, for whatever reason, no one knows, the optic nerves stop developing). Alexis also has nystagmus as well. She has a searching nystagmus, meaning that her eyes are constantly roving, trying to find somthing to fix on. In addition, she developed a null point nystagmus. What a null point nystagmus means is that there is a certain position where the eyes can be positioned so the nystagmus can be reduced or eliminated. Ideally, this null point is center. Unfortunately, with my daughter, hers was 20 degres offcenter to the right. She ended up developing a face turn to the right and shifting her eyes to the left. We first thought this was happening because her left eye has better vision and placing her head in that position allowed her to maximize using the vision in her left eye. After awhile, the null point nystagmus was diagnosed. She had a simple surgery (very much like strabismus surgery) to tighten certain eye muscles and loosen others to allow the null point to shift to center. Within 2 weeks after the surgery the face turn was gone. If you ever notice face turning occuring, you just may want to mention a possible null point nystagmus. Alexis was almost 5 when hers was corrected and had the face turn since she was about 2 and 1/2. It's been pretty scary, but we all understand what you are going through and have had similar experiences. Alexis was diagnosed with her visual impairment at 6 months and that was the worst day of my life. I grieved for a little while, but then started fighting back. We called the Commission for the Blind and Visually Impaired, met with the pediatric caseworkers, and were refered to Early Intervention. In my state (New York) it is automatic for any child with a visual impairment of any kind to be referred and evaluated by Early Intervention. Good Luck and know you are not alone, we can always answer questions, commiserate, or just be a shoulder to cry on.
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  #3  
August 24th, 2007, 08:37 PM
Veteran
Join Date: May 2004
Posts: 393
Hi Sara,
Welcome to the board! I am Jenn - my little boy who just turned 5 years old was dx w/ Nystagmus at 5 mos of age. For us the MRI of his brain thankfully did not reveal a tumor, but it did show damage to his brain - although we have no idea why (PVL and a migrational neuronal defect).

Anyway, he is doing quite well - just started Kindergarten. His vision is pretty good although in addition to his Nystagmus he also has amblyopia in his left eye.

Can't wait to hear more about Ryleigh!

Jenn
Mommy to Kendall, Cade and Colton
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  #4  
August 27th, 2007, 12:30 PM
Super Mommy
Join Date: Jul 2006
Posts: 924
Thanks for welcoming me. My heart just broke reading about everything your babies have gone through and are going through. I am scared. Just playing the waiting game until her appointment in October. I am angry and I am sad. I don't show it or admit it ever really...to anyone lately...but it is in the back of my mind everyday...and I watch her moving that head left to right, left to right...and I see other children just as still as they can be...

She does this thing...and I am not sure if it because of the nystagmus, like if it is her null position or something, but she lays on the top of her head like she is looking at the world upside down, doing a slight back bend...I had her in the stroller at a truck show this weekend (DH owns a trucking company) and she was doing it then and everyone is all awe she is trying to look at you and oh she is just fascinated with the lights and I am thinking I think that is how she sees. I would straighten her out but she just does it again. She scoots around like that too. I know she can see...she focuses on us pretty well and will reach for her bottle and looks at things like toys sometimes but she isn't following objects or anything. I just don't know. I just feel so sad for her. She rubs her eyes alot and I feel like their moving bothers her. They lay pretty still when she eats and when she sucks on a pacifire or her thumb....it is better some days than others.

It is just so heart breaking.

Sara
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  #5  
August 27th, 2007, 09:55 PM
samylaine's Avatar Super Mommy
Join Date: Jul 2006
Posts: 534
Hi Sara, welcome!
I'm Sammie. I have a 3yr old who was premature and has ROP (retinopathy of prematurity). He had laser surgery on both eyes in Oct 2004. His vision in his right eye is almost perfect at 20/30 but his left eye he is legally blind in. With his glasses on he can now see 20/70 and that is progress! Last June with glasses he was seeing 20/160 out of that eye! We have been patching his good eye every day since to strengthen the bad one and make him use it.

Glad you found us here!

Sammie
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  #6  
September 20th, 2007, 04:31 PM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
Posts: 61,642
Welcome to the board! I feel bad for not welcoming you earlier. I have been meaning to get over to this board and post. My son has optic nerve hypoplasia and nystagmus.
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