NeuroTalk Support Groups - mental retardation, CP, cortical blindness,seizures

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- - mental retardation, CP, cortical blindness,seizures (https://www.neurotalk.org/new-member-introductions/46304-mental-retardation-cp-cortical-blindness-seizures.html)

Quote:

Originally Posted by janash (Post 284716)

Hi to all!!!

I have an 18 y o son who is severly handicapped. We live everyday with all the above mentioned (title). He has been on a long list of seizure meds and we are now investigating the VNS for seizure control. Would be greatly interested in connecting with any and all who have valid info and or personal knowledge and experience with VNS. Also, I would be interested in comparing notes on any and all the above and below mentioned disorders that, at least for us, fall under the umbrella for the diagnosis of cerebral dysgenesis.

My sons conditions are severe seizures, CP, cortical visual impairment (CVI,CVD). He is non-abulatory, and non-verbal. He also has a Mickey button and thus receives all nutrition and meds via the tube.

Your son sounds so much like my little guy. My Jackson is 2 and has severe epilepsy, hypotonia, cp, global developmental delay, cvi, among other issues. He is non amulatory and does not speak. We have already been on soo many seizure drugs. I would love to hear how VNS helps your son! Thanks! Jennifer

Welcome to NT

There is a lot of info here to go through.

The people are great.

It's always good to have another person sharing their experience. We all grow through NT...

Welcome to NT

It's a great place to find support.

I look forward to reading your posts...

Welcome to NT

It's good you're on board here.

I look forward to reading your posts.

Hi I'm Donna. And my son is 18 he has had a VNS for almost 6 years.

4/21/10 will be 6 years for him. He is getting ready to have his
battery, and because the new VNS's are better a new one.

For him, the VNS has been the reason he has a life. He was having
many seizures a year, week or month. Not positive how many.
And he had no real quality of life.

If you have questions let me know.

Donna:hug: