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vns
Wed, 01/30/2008 - 18:21My son is scheduled for vns march 4th. I am quite scared about this,have been researching it for several years now. It seems they find new problems all the time. I understand thtas how it is,but if anyone has any info for me to keep me from cancelling,please let me know. He is 11 yrs. old. Was diagnosed with myclonic epilepsy when he was a baby. Have tried every medicine out there,nothing seems to work. He has about 10-20 siezures each day(short ones) Grand malls about every 4-6 weeks,he goes thru periods of cluster siezures,drop attacks ect..He is on depakote and zonegran right now.this combination is the only one that actually decreased them from about 50 a day down to 10-20. Anyone have any info or anything to help me?
Thank you,Lisa
Re: vns
Submitted by birdbomb on Wed, 2008-03-26 - 01:24
VNS has not been tested on children. It does not have FDA approval for kids under the age of 12 years. Although many children as young as 18 months have been implanted, be forewarned, should your child develope any severe side effects or be damaged in any way, Cyberonics will claim user error, even though this device is marketed off-label.
I know a lot of kids have been helped but I know just as many have been harmed. Learn all you can! Download and read the manuals. Talk to everyone who has a VNS good results, bad results, adults and parents of children. Go into this with your eyes open.
Statics are misleading. MRI's may be a problem in the future. Not to mention, once it's implanted, many doctors will refuse to treat you because they don't deal with the VNS.
Good luck in whatever path you choose.
VNS Message Board "If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS has not been tested on children. It does not have FDA approval for kids under the age of 12 years. Although many children as young as 18 months have been implanted, be forewarned, should your child develope any severe side effects or be damaged in any way, Cyberonics will claim user error, even though this device is marketed off-label.
I know a lot of kids have been helped but I know just as many have been harmed. Learn all you can! Download and read the manuals. Talk to everyone who has a VNS good results, bad results, adults and parents of children. Go into this with your eyes open.
Statics are misleading. MRI's may be a problem in the future. Not to mention, once it's implanted, many doctors will refuse to treat you because they don't deal with the VNS.
Good luck in whatever path you choose.
VNS Message Board "If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)