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VNS anyone here have it or know one that does?
Wed, 10/04/2006 - 20:29Topic: Parents & Caregivers
since my daughter is still not 100% clear, from the seizures, and her grades ae in the crapper, and a few other things, the doc gave us two more options. add another drup to her daily meds now. the down side is it has problems with the bone marow (sp?) OR what he recommends is the VNS. the 13 min video was not helpful at all. so if any one has a child with this or older teenager I'd like to hear from you. if all possible i would like to talk with the parent about it. we could set up a yahoo chat no problem. thanks.
scott
Comments
Re: Re: VNS anyone here have it or know one that does?
Submitted by ScottM on Thu, 2006-10-05 - 06:14
Good monring missy yes it is felbatol. I think having epilepsy is bad enough but when it my daughter and some of the med screw aroud with certain things I just have a hard time to put more junk into her body day after day..after day. she is 14yro and my wife and I sat her down and told her the two options. she opted for the implant. I know she is tired of having to take all the meds every morning and every night. I tried calling the support line last night but they were only open till like 5pm edst time. how long did it take for it to start working for your son? i've read that it can take up to like 1-2 yrs before it starts helping. then other times ive read it starts in 2-3 mnths. when the doc told me the % of audlt that died from felbatol it was almost a show stopper there. but as of yesterday there was only one boy a 15yro in fl that was healthy except for Epilepsy that had problems with his bone marrow he didnt die thoguht. you say your son is on his 2nd VNS what happened to the first vns? did it go bad, or the battery run out? thanks for your input.
scott
Re: VNS anyone here have it or know one that does?
Submitted by Missyat on Wed, 2006-10-04 - 23:21
Hi, My son is on his 2nd VNS, and is 9 years old. His first one was implanted at the age of 5.5 years old. My advice would be to call Cyberonics and ask them for numbers of parents with children at the same age as yours and call them. Your next med sounds like felbatol, my son was already on it and helped his tonic/clonics. Yes there is a chance of bone marrow depression, but for my son it was for high risks groups and he was very low risk. The VNS is a blessing for my son. It is a hard decision to make. but your best bet is to know all you can about this device, know the pluses and the minuses... know more than the docs do.