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Date for VNS Surgery-Please comment

Wed, 05/31/2006 - 12:21
Hi, this is my first time on this list and posting. My daughter Claudia has had epilepsy now for 3 years. She is an active, beautiful and very social 8 year old and is an only child. She has been on many meds and still no releif. Her Doctor is Dr. Pak from UMDNJ and we reside in Bayonne NJ. We finally decided to go for the Vagus Nerve surgery which is to take place on June 1, 2006. If anyone has any info on how this worked for their child please share. I feel as if I am at my wits end with this situation. My daughter first only had partial seizures on her right side but now they seems to be traveling to the other side so the doctor felt it was time to intervene. She has only nocturnal seizures and I have seen a corrolation with anxiety and an increase in her seizure activity. Also she is not a surgical candidate because the Dr. Pak says the area is to close to were she may have a stroke. She has been on Carbatrol which she had a severe allergic reaction to and even had stevens johnson from it 6 weeks into the trewatment, depakote regular and topomax seem to affect her both physically and emotionally. Know she take topomax in the morning with depakote ER and the same at night. Anyone with info on how their child reacted to this please share and especially how it impacted their lives. I am a single mom who is 36 and I work for the phone company full time and also attend school full time. I plan to be vocal on this board with the hope of helping others and gaining more understanding of this illness. And now that I have written so much I shall wait :)

Comments

Re: Re: Date for VNS Surgery-Please comment

Submitted by norma4797 on Wed, 2006-05-31 - 19:21
Missy, Thanks for the information and I haven't called the company because I felt that here I could get a mixed bag as well as real information without bias opinion. So far I am getting just that. I enjoy hearing th good and the bad only because it keeps me balanced. Thanls for your story and I wish you and your son the best. :)

Re: Date for VNS Surgery-Please comment

Submitted by norma4797 on Thu, 2006-06-08 - 19:47
**UPDATE** Hello everyone! My daughter had the VNS Surgery on June 2 as planned and I am in awe! She is healing very well and is tolerating the antibiotic as well. We came home the next day and from the moment she came out of surgery she seemed different. At first I thought It was just wishful thinking but after having a whole weekend without seizures I began to wonder. She returned to school on Monday and even her teachers noticed the difference. She is confident and positive and since she is getting the rest she needs and is NOT having any seizures her mind is clear. She has taken 2 test since the surgery and she aced both of them. I am so grateful for everyones prayers and well wishes. I know that this may only be for a bit but right now I am in a good place. In an essence I think we both needed the respite. Thanks, Norma

Re: Re: Date for VNS Surgery-Please comment

Submitted by mjsmom on Fri, 2006-07-28 - 18:09
Hi Norma: I am so happy for you and your daughter...I really hope things continue to go well. I also have an 8-year old daughter with epilepsy. She had epilepsy surgery last year January 2005, which did not help her...much to our disappointment. We are working with other meds (she's been on almost all of them)...thought it might be nice to chat about our challenges...

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