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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 Missyat on Fri, 2006-07-28 - 19:58
Oh, Norma... I am tickled pink!!! I am so happy that the VNS has helped.... yes when our children are not seizing they are pretty bright! Congrats and enjoy this time .... Missy

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