My son was dx at 6 yrs old with epilepsy (hes had symptoms from what I can remember since about 5 maybe earlier)He willbe 17 this month. He has Occipital seizures, right sided, generalized, Myoclonic, Tonic-Clonic, Partial, Complex partial, absences, and most recently clusters. He is not responding well to medication and never has. Hes been on tegretol, another one which I can not remember, and Frizium. He is currently on 1500 mg Epival, 300 mg Dilantin and 300 Lamictal per day, this was increased in March, and he continues to have seizures, and recently developed a sort of rash on his scalp due to lamictal which he is being treated for now, his last blood test showed a very low level, and his eeg shows very active epileptic activity which is baffling his neuro. I was told by Neuro that the possibility of surgery is out of the question and from what I understand this includes VNS. He is averaging 20-30 seizures a month despite the increase in meds, his neuro has not wanted to try other medications, since he feels that it will not help him and side effects will be worse. Boy at times I wonder what is worse the actual seizures or the side effects, not to mention since the increase of meds, well increase of the side effects. My question is since medications is not helping including the increases, should I push for VNS even though his neuro feels it might not help at all since he is generalized? Im thinking that if the VNS could somewhat reduce some of the seizures along with the meds, wouldnt that be a good thing? I would rather try the VNS and keep him on his meds (hopefully reduce) and if it works great if not then just have it removed, but at least we have tried. I have spoke to Jason regards this and he really wants to try it. Im seeing his neuro shortly and I think I will push for the VNS and not agree to any increase or change b4 we at least consider the VNS. I would appreciate any advise or comments.
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