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May 2015 Moms
khoff23
member
Nystagmus
khoff23
member
Anyone have any experience with this?? My 3.5 month old is showing signs of it so our pediatrician is sending us to an opthamologist and a pediatric neurologist and of course I'm freaking out. The pediatrician says it could be a sign of a seizure disorder and that's what killed my brother in law so I'm going nuts.
Re: Nystagmus
Anyways, my niece had nystagmus starting around this age with her eyes going up & down rather than side to side. She went through many procedures, including two under anesthesia, to rule out issues like seizures & brain tumors. She had neither. During this time she was also seeing a pediatric opthomologist, and my sister was told that my niece was likely legally blind. At these appts they would take pictures of her retinas. They discovered that her retinas did not develop properly & were folded upon themselves. At this point she was also diagnosed with microcephaly. She was evaluated by a neurosurgeon to make sure her growth plates were not fused, and fortunately they weren't.
My niece had a follow up 3 months later and there was better than expected improvement with one retina. She now (at 10 mos) wears glasses. It's amazing the difference in her when she has them on. She also has evaluations through the AEA birth to 3 program. She is hitting all her milestones and is a happy, otherwise healthy baby.
My sister has a blog. I could get you the info through pm if you're interested.
I hope that you find out it is something very minor or insignificant. Please know, however, that if dealing with bigger issues you can do this. It won't be easy, but you'll find an inner strength stronger than you knew possible. I look up so much to my little sister.