Epilepsy. Interestingly enough it is a 'product' of his CHD!!!!! He has a congenitally underdeveloped vessel in his right temporal lobe where the seizures are originating from. I guess because it is part of his vascular system it is CHD related. (that is how the Nurse Practitioner put it). An incidental finding is that he also has a very small cyst next to this vessel but they don't think has anything to do with his seizures. He will start Trileptal tomorrow (the pharmacy has to order it). His seizures are on both his left and right side which (she said) goes along with epilepsy - something about if it were only on one side it wouldn't be epilepsy...I don't know. Anyway, the meds should take 2 wks to work but will make him drowsy and possibly dizzy. It won't interact with any of his other meds but we will need to monitor liver function I believe (as with most epilepsy meds). I just realized that because it is caused by a congenital defect he won't ever grow out of it...that sucks.
So I guess I have to get him a new medic alert bracelet...
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Oh, Becky, you guys have just been run through the mill. So sorry for all that you've had to deal with. At least you have a diagnosis and know how to deal with it. Out of curiosity, how long has he had the seizures, did they appear suddenly or have they always been there? You've probably said in a past post, but I can't remember.
Anyway, praying for you and that you can have some peace and less exciting moments.
Oh wow.... Epilepsy... I have the same question - was the first seizure the one you posted about recently or do you recall previous symptoms. I'm thinking even like tet spells when he small - could he have been having a seizure instead. Is it a direct product of CHD or b/c of being on heart/lung? Sending big hugs to your cute little guy.
WHAT????????
OMG...
I must read on...
Wow... I feel awful for you..
I can't imagine the stress....
that is very scary
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