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vns for a four year old
Mon, 10/23/2006 - 21:53Topic: Living With Epilepsy - Youth
Hi, I have a four year old granddaughter with epilepsy and autism, she also has delayed development, she has been on many meds since 18 mos. old, and now is having grand mal seizures, VNS has been suggested, does any one know of a child this age who has had this surgery?? and what was the outcome, thank you
Comments
Re: Re: vns for a four year old
Submitted by grammy4dolla on Mon, 2006-10-30 - 21:31
thank you so much for writing to me, you are the first person I know who is dealing with a child too, my daughter and son in law are very concerned about making this decision for their daughter, mainly afraid of a bad outcome or that it won;t help, there have been some changes in meds lately and there seems to be some improvement, so I think they are going to wait on the surgery. good point about the autism making it harder for her to deal with the implant, I'll pass that on, looks like a waiting game at this point, but thank you for your interest and I will keep your son in the prayers I say everday for my granddaughter.
Re: Re: Re: vns for a four year old
Submitted by Missyat on Sun, 2006-11-05 - 00:43
It was a very difficult decision for my hubby and I to make because our son could not tell us what was going on. We had to second guess what he needed.
And I second guessed myself all the time even when he was in the first surgery.
And yes, we used the VNS as a last resort... after 13 different meds we have currently ran out of any new ones to try.
If they can find that "magic" pill then by all means go for it... we couldn't find it..
Good luck, and email me anytime
Missyat2001@yahoo.com
Re: vns for a four year old
Submitted by Missyat on Sun, 2006-10-29 - 22:04
My son was 5 years old at his first VNS implanting, within 2 hours he was out and by 5 hours later we were home. Some neurosurgeons make them stay the night ours didn't and that was ok. Within a month of turn on my son went 182 days without a seizure! YIPPPEEE BUT (yes big but's get in the way) his now EX neuro refused to see him when he started to have breakthrough seizures... for 6 months!! and the seizures are back. The VNS knocked out about 75% of my son's seizures. He is currently having up to 10 a day. The first VNS' battery died on him, after 3 years and at 8 years old he had his first one EXplanted and the new 2nd one reimplanted. The second surgery was only 1/2 an hour. It is a surgery, so worry about infections, being autistic you may want to watch for her pulling on the incision, or at the device itself. The VNS is just like any other med out there, sometimes it works and sometimes it doesn't. Know all you can about it... make sure in your heart it is the right thing to do.