mental retardation, CP, cortical blindness,seizures
 

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.

Hi, Janash! :Wave-Hello: Welcome to NeuroTalk!

Your little dude sure has a handful of conditions, it has to be difficult for you. This is a huge community of compassionate and informed people, I hope you'll find some answers.

You might like to look at our CP forum for a start.

CP:
http://neurotalk.psychcentral.com/forum52.html

For questions about specific meds, it might help you to visit our medications forum.

Medications:
http://neurotalk.psychcentral.com/forum72.html

We have an epilepsy forum as well where you might find some specific information on seizures.

Epilepsy & seizure disorders:
http://neurotalk.psychcentral.com/forum11.html

We also have a search engine located in the toolbar near the top of every page where you can locate discussions about specific meds and topics via keywords.

I hope you'll find our community both helpful and supportive. Feel free to join in anywhere and let us know if we can assist you in navigating the forums. :)

Welcome to the board.

WOW!! I didn't think I would ever come across anyone who's child had the same disorders as my daughter.

My daughter has mental retardation, mild CP and seizures. And now some undx'd auto immune disorder. She is 22 yrs old.
She is a very capable child(adult, I guess) Mentally she is somewhere between 8 and 40. Some days her mentallity is like an 8 yr old. Some days I wonder if she's mentally older than I am.

It sounds like you have many more challenges than I do.
My daughter is able to do most things for herself. Brushing her hair, shaving, cutting nails are some things I do for her.
She is able to do some house hold chores.

I look forward to getting to know you.

DAY

Thanks for your prompt attention to my post! I have been browsing the very links that you posted in your reply. I tried to post to a message to one link prior to posting as a new member and received a message saying I had to post at least (x) amount of times before I could respond directly to a message. I am confused to the meaning of that!

BTW I graduated from Pontiac Central and I have family in MI. I love it there!

DAY, I also look forward to getting to know you and sharing with you. As for my son's diagnosis; cerebral dysgenesis means he had abnormal brain cells from birth. The grey matter and white matter in the brain are fused together in some places. Because the brain is abnormal the body does not receive the messages correctly so therefore the CP and seizures as well. Seizures damaged the visual center in the brain causing the cortical visual damage. His eyes can see. His brain does not interpret his vision.

I don't know about more challenges than you! LOL Mine are just different. I have 3 other children. Two older and 1 younger than my special son. At least with my handicapped son I know where he is and what mischief he is not into! My other children only God knows! They are great kids nonetheless and never in any serious trouble.

I do look forward to sharing with you.

Janet

Hi Janet and welcome to NeuroTalk!


http://i283.photobucket.com/albums/k...toGroupTag.gif

welcome janet.

new members can't post links. it keeps spammers from posting. :)

Hi Janet and welcome to NeuroTalk from me as well.

I see you have lots of helpful information to wade through, and that you've already met some of our wonderful members.

Hello Janet and another Welcome to NeuroTalk here. As the others' have posted, this is an amazing, informative and caring place and I hope you will feel at home here.

Sometimes it's great to just come here and let off a lil steam. We are all here for one reason or another, so glad you found us.

http://dl2.glitter-graphics.net/pub/...l3mtuoldwc.jpg

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: