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Nystagmus ***UPDATE***

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August 22nd, 2007, 01:25 AM
Join Date: Mar 2006
Posts: 39

my daughter millie is 21 months, she was born with nystagmus. Initially she didnt follow or track things . However in time she was able to follow things and locate things. She still has nystagmus, but much reduced she can see things close up quite well. Im not so sure about distance. she can see me across the room or something that interests her.

i am an eye specialist so i knew straight away her eyes werent right and got her checked out at the hospital where i work. The type of nystagmus she had meant she had to have scans, blood tests etc.

She also has delay in her motor skills. But shes coming on very well!!

hope that helps, dont take in everything you read on nystagmus. I see patients with nystagmus as adults and they have normal lives with slightly below than average vision!

you need to see an ophthalmologist rather than optometrist.

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August 22nd, 2007, 07:51 AM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
Posts: 61,857
My son has nystagmus. There are so many reasons for why she could be having nystagmus. It could be a neurological issue or a problem with her vision. Brandon was diagnosed at four months with optic nerve hypoplasia but there are many disorders associated with nystagmus. I am sure you are worried and the not knowing what is going on makes you even more stressed. I remember waiting for Brandon's eye appointment. It was very stressful. I hope you get some answers soon. And try not to worry too much. Brandon's nystagmus is barely noticable now and I don't believe his vision problems are very severe. It sure was scary when he was a baby though. (((HUGS))) and welcome to the board.

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August 23rd, 2007, 05:49 PM
Super Mommy
Join Date: Jul 2006
Posts: 924
Hi There...

This was crazy. I have been a member of JM for over a year now and I never knew this forum was here. I came across it on accident and the first post I see is about nystagmus. I just went through this...

I took my daughter in for a cold (two month birthday) and my pediatrician noticed the same things with her eyes...only her eyes move side to side and up and down. The next thing I know I am being referred to a nuerologist...yes I was very scared. Worst couple of weeks of our lives. Anyway, we were seen almost immediately. We met with the nuerologist who sent us right away over to get her an ultrasound done on her belly to check for tumors and growths, an MRI on her brain and spine to check for tumors, and had to drop off a urine sample at the children's hospital to test her for neuroblastoma (eye cancer). Also, he referred us to an OPTHAMOLOGIST. Not an optometrist. So yea, that was pretty awful going through all of that and expecting to worse. Prayed very hard. Well the Lord answered our prayers and everything checked out fine from the tests. So then we met with the nuerologist and the prognosis is that she has congenital nystagmus...meaning she was born with it and looking back I always noticed her eyes but being so young you just don't know. From what I understand you really won't know a whole lot until they get older like how well they can see...they could have perfect vision, be able to play sports, drive, and even be a pilot if they wish to or they could be legally blind. So I have been working with her on focusing and looking straight ahead. Nystagmus children develop what is called a null position where they will ock there head a certain way because it slows down the dancing of the eyes and they can see well that way. So we are trying to avaoid that. SInce finding all this out (she turns 4 months on the 3rd) I have noticed her being able to focus on me and her daddy and brother and smile and laugh. She also can see her bottle and will reach for it and pull it to her mouth. She also loves facing outward cause she can see everything. I truly believe she can see. The opthamologist said she was significantly far sided but most babies are...so really now all we can do is wait. We go back in October for more tests. The waiting game is the worst part. But we continue to work with her and pray and hope for the best. It breaks my heart that any child or parent has to go through anything like this...but as far as her development physically she is right on track. Smiles, laughs, rolls over but hates tummy time...very strong neck, sits up nicely with support...she is doing fantastic!

I was really excited to see this because from what I have heard it is very rare and having other parents and children having nystagmus to talk to is wonderful in the sense that we are not alone. I have read up on it and glasses and contacts are an option. I have read some cases of successful surgeries. I have also known of people to grow out of it...

My thoughts are with you and I hope my experience didn't scare you. I just want you to know you aren't alone.

Sara - May 207 Playroom )
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August 24th, 2007, 08:32 PM
Join Date: May 2004
Posts: 393
Should I wait until her appointment to worry, or not worry at all? What is the best and worst case scenario? And don't I need a referral from an optometrist to see an opthamologist?[/b]
I would say to not worry, but I know as a mom you can't help it. My son was dx w/ Nystagmus at 5 mos old and he has never seen an optometrist - we went straight to the opthalmalogist. I don't know if your insurance requires referrals but your ped should be able to refer you to the opthalmalogist if you need one.

I can tell you that my son is 5 years old now and I think his vision is pretty good. You just really can't tell how the eyesight will be until they grow and get older. My son started receiving services from our state's institute for deaf and blind as soon as he was diagnosed and he really has done great.

Please keep us updated on what you find out and if you have any specific questions, please post them!

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September 10th, 2007, 09:49 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Zoe saw the optometrist on September 6th who said she definitely has nystagmus, he's just not sure which type. He's leaning towards congenital nystagmus or infantile jerk nystagmus. He gave us the worst case scenario, and that would be a brain abnormality or a tumor that is causing her nystagmus, but also said that more than likely, she will outgrow it eventually.

He told us that nystagmus is far more common in boys than girls, as in it's rare in girls, but he definitely sees it. Just be sure what type it is and to make sure it's not a tumor or brain abnormality, he's referring us to an opthamologist an hour away from home. We should be seen within the next month.[/b]
My daughter also has nystagmus. Hers is a searching nystagmus. She is visually impaired (she's got septo-optic dysplasia which causes visual impairments, pituitary disorders and some brian structure abnomalities). She has been visually impaired since birth and has the nystagmus since birth as well. Her nystagmus has definately improved as she has gotten older. She has more muscle control and has learned to use what vision she does have in a more functional manner (she is 20/300 to 20/400). Searching nystagmus is where the eyes are constantly flickering and moving in an effort to find something to focus on. Once she is focused the nystagmus decreases. In addition, she has a null point nystagmus (originally 20 degrees to the right which we had corrected in Dec). Now, I only really see the nystagmus when she is tired or bored. Even with Alexis' visual impairment, we have seen such decreases in the nystagmus as she's gotten older. She will probably never outgrow hers, but hopefully Zoe will.

Alexis also had MRI's when she was 6 months old. That was rough because the children have to be sedated to make sure they don't move while doing the MRI. She did beautifully and we had great anesthesiologists who explained everything. Good luck, your in our prayers and we hope there are no tumors or brain abnormalities. Keep us posted.
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