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Hi I'm Nicole. I've been a member of JM for what seems like forever but it just occured to me today to look for this forum. My youngest just turned 10 months and she was diagnosed with CVI about 4 months ago. I really can't seem to find a whole lot of info on it it seems like it is a very rare condition that they don't seem to know much about. She is currently getting vision therepy once a week and she goes to the opthomologist every 2-3months. I'm thinking about taking her to a nuerologic opthomologist. I guess Im wondering if anyone knows anything about CVI, has a child with it, or knows anything about nuerologic opthomologists. There aren't any of those in our area so I would have to travel a considerable distance to find one Im just not sure if it would be beneficial or not. Anyway any info you could offer would be great! Thanks!
I have no experience or knowledge of it but I think someone around here might!
Welcome to the board though... it is a bit slow lately but usually just means the moms have been busy, lol.
My son is 4 and a half and has ROP (retinopathy of prematurity).
We drive to OK City ( a 2 hour drive up and back for us) every 6-8 weeks for an eye exam... he's been wearing glasses for 2 and half years now.
I wish I could help you. My son has Albinism. (nystagmus/slight strabismus) I didnt realize there was a neuro opthamologist. I will have to research that in the Houston area, b/c I would love for our son to see one.
Hi-just a lurker here but hope I can be a little help. I don't know anything about CVI but I do know a tiny bit about neuro-opthamologists. My son had issues with his eyes so we were referred to a pediatric opthamologist. When he couldn't figure out what was wrong he referred us to the neuro-opthamologist. He diagnosed Luke with OCA-basicly he can't move his eyes side to side, and focusing is hard for him. He ordered an MRI for Luke and we found that he has hydrocephalous wich is causing the OMA.
Because I don't know anything about CVI I don't know if it would be beneficial to see one but if you aren't getting the answers you need from the doctors you are seeing it may be worth a shot to check into it. Good luck and I hope you get the answers you need.
Hi! My son has to see an neuro-opth for his nystagmus, there are not a lot of them around but usually the childrens/major hositals will have them. They are wonderful and have a lot to offer when it come to knowledge and treatment.