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Nystagmus Questions

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August 27th, 2007, 12:43 PM
Super Mommy
Join Date: Jul 2006
Posts: 924
I have read your posts about your childrens with nystagmus and I was wondering if the other disorders yall mentioned were diagnosed at the same time or before the nystagmus was diagnosed? Or did they diagnose nystagmus only to find out later they had some other things going on? I am just so worried about it all. She had the MRIs and Ultrasounds, and the urinalysis done and all looked wonderful and normal...she saw the opthamologist and he said structurally everything looked good. Her next appointment is in October and I think they are going to do some light test...something about a "transmitter" on the back her head so when they shine a light in her eyes they want to see if it goes to the back of the brain or signals the back of the brain...does this sound familiar to anyone? I dunno if they are doing that next or waiting until she is older.

Looking for some answers....

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August 27th, 2007, 12:56 PM
Join Date: May 2004
Posts: 393
For us the Nystagmus dx was the first one we got. Of course since we had the MRI of the brain after the N dx that was when we found out about the PVL and the migrational defect. All of the dxs that we have gotten since then are related to the damage Cade has to his brain. I know it is hard to say not to worry but I know of plenty of people whose only issue is Nystagmus. I think it is very good that all of her tests have come back normal so far - that is great news!

I would guess the test you are talking about could be the ERG - electroretinogram - but I am not positive.

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August 27th, 2007, 02:19 PM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
For Alexis, her optic neve hpoplasia and nystagmus were diagnosed at the same time. The nystagmus was always present but not diagnosed for a while. We consulted her pediatrician at 4 months, who referred us to neuro. Neuro said she looked good and didn't see anything overt, but ordered an MRI and referred us to opthalmology. We saw the opthalmologist at 5 months and he was the one who diagnosed the nystagmus and the ONH. He also requested an MRI because septo optic dysplasia (the more severe form of ONH) is characterized by the ONH, an absent septum pellicidum (webbing between the 2 hemispheres of the brain) and pituitary involvement. The MRI done at 6 months showed the ONH and the absent septum pellicidum, meaning she had the severe form, SOD.

It is wonderful that all the tests so far are negative. I think for us, the brain structure involvements are the worst (Alexis is also at risk for developing hydrocephalus). And as Alexis has gotten older, her nystagmus has become remarkedly reduced, especially after her null point correction surgery. The only time I really notice it now is when she is tired or her eyes are fatigued (usually after vision therapy) or if she is not really focusing on something. Our opthalmologist and low vision specialist both say that as she gets older and gains better eye muscle strenght, the nystagmus will be reduced. They were definately right. She is getting better and better.
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August 27th, 2007, 03:09 PM
Super Mommy
Join Date: Jul 2006
Posts: 924
Both your posts offered me a great deal relief and hope. I think that your daughter was able to get the null position surgery is just fantastic! I hadn't heard of that...I have read some cases where they removed then reattached the eye muscles which tricks the brain and slows down the nystagmus tremendously. Sorry I am not very proficient with the termonology just yet.

You ladies have been great!
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September 20th, 2007, 04:30 PM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
Posts: 61,858
Brandon was diagnosed with the nystagmus and optic nerve hypoplasia at the same time. But I really didn't notice the nystagmus at first. It got really bad for a while and was very obvious and that was when it started to freak me out. Now I barely notice it and I am really the only one that seems to notice it.

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