Has anyone had VNS done for their child

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My daughter Has LGS and her seizures have been very hard to control. When a med helps she eventually becomes immune to it. We've been through all meds. She is currently on Felbamate and the Keto Diet. VNS are our last hope. So our neurologist tells me.

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Submitted by Jorge Lango on Thu, 2007-05-03 - 08:49

Someday I was reading about the epilepsy to be an spiritual "disease", some people use to call it "the bless disease" based on the idea that is God's chanelling to the patient trough a so called "the God's Spot". My daugther woke up from unconseous state after been in myoclonic electrical status (one of the worse epileptic conditions because the risk of permanent brain damage) and the first think she asked after she saw my wike was: "why do you have a crux in your forehead"...mi wife was in shock. The my daugther saw my mother and mentioned: "and you also Grandma, you also have a crux in your forehead...why? This conditions we are dealing with my daugther is becoming more and more spiritual as the "traditional" medicine is running out of options. Perhaps we should focus more on the spiritual side of side than in the medication side. My daugther is still strugulling with this, but now I know that whatever happened during her unconcious time, makie me fell that she is way more spiritual and closer to God than me and mi wife. Probably, the day we as parents accept her condition and really be thankfull to God and put everything in HIS hands, she will recover or she will be with HIM. God bless you, Jorge.

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Submitted by jdgarci on Fri, 2007-05-11 - 01:34

Hi, I thought I could offer a little help on the subject. I don't personally have seizures but my fiance does (grand mal, tonic-clonic). We started dating roughly 3 years ago. Shortly after we started dating, I began to find out (little by little) about her seizures, her daily struggles, and so on. From what she would tell me, her stories sound very similar to those of your child i.e. daily, multiple seizures and frustration with her condition. She went through a very rough stretch for quite a number of years (her seizures started at 16, she is now 28). Come to find out, just months before we started dating, she had a VNS implanted. To use her own words today, "VNS has been a miracle". She can usually "catch" a seizure with her magnet by swiping her VNS and if she is unable to catch it, the VNS seems to help to limit the severity of the seizure. The VNS has helped her tremendously and as I continue to learn more and more about her condition and how to deal with and treat it, I realize just how important the VNS is to her. I know that if she could, she would go round the country telling all about how the VNS has helped her. She remains on daily meds such as Keppra and the like, but she has made tremendous strides in her health and overall "quality of life" just within the 3 years we have dated. Counseling has also played an important role in her life to help restore her self image and self confidence. The side effects that you speak of are noticeable, but only to a limited extent. Her voice can become raspy at times, her throat is sometimes irritated by the wire, and she does sometimes sound a little different when she is speaking when her VNS is "kicking on". These effects usually only last the duration of the stimulation though, of course depending on how the VNS is set. I am comfortable in saying though that she will gladly take the discomforts of the latter than the results of the former i.e. not having the VNS. The percentage decrease in seizures is all relative but for her it has been about as dramatic a reduction as one could hope for. Her number of seizures has continued to decline since we have dated and she is now to the point where she rarely is unable to "catch" the seizure. She is not completely rid of the seizures, but to even say the difference is night and day would be an understatement. I think it is important to note though that her counseling along with regular changes in meds and the VNS all seem to work hand in hand with each other in order to maintain the utmost level of consistency. I hope this provides some insight for you and I hope you are able to find the resources and answers that you seek. God bless and take care Jon

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Submitted by Abbygirl on Fri, 2007-05-11 - 11:11

Thank you so much for your comment. It's so good to hear positive responses. My daughter was implanted on May 9. It has not been turned on yet. I'm really expecting it to help some. A raspy voice cough or difficulty swallowing is nothing compared to her daily seizures. I think we will manage if it helps her. Thanks!