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Epilepsy essentially confirmed... next steps

Hi everyone. Thanks to all of you who responded and sent good thoughts to my previous posts. Well, it probably goes without saying that I am at the low point in my life; we had an appointment this morning at Children's Hospital of Philadlelphia and the Nurse Practitioner, along with the Attending Physician, basically confirmed epilepsy. For those of you who haven't read my previous post, a little less than a year ago, our daughter began exibiting a curious eye motion which I now believe (after a lot of searching) is something called "eyelid myoclonia without absences". Here are a few links if anyone is interested: http://www.ilae-epilepsy.org/ctf/eyelid_myoclonia_w_wo_abs.html http://www.neurology.org/cgi/content/abstract/63/1/40 Apparently, if this is what it is, the epilepsy may be treated but the twitch may remain. However, the attending (who indicated he's seen this before) said the medication has stopped the physical manifestations of the seizures. I don't know what to think, but I'd like to think he's correct! Anyway, as I've said before, I realize a lot of people are in much more "serious" situations and I suppose we should feel lucky; so far, it hasn't impacted her life or growth and she is smart and fun. My heart goes out to all of you who have somehow managed to progress through such emotional turmoil. We're going back tomorrow for a 4-hour EEG in which she basically watches TV and we hit a button when she "does the eye thing" and we were told this is to basically confirm that the seizures on the EEG are indeed causing the eye movements. We have also asked for a referral from our primary doc for an MRI, though the two gentlemen we met with reassured us that there's almost no concern on their part anything serious will show up. Right now my greatest concern is the side effects of drugs. I guess there's always that chance. I think they said the choice would most likely be Depakote, which side effect (mainly) would be liver damage. That's kind of scary, but apparently if detected is reversible by going off that med. On the upside, we have a great family and some good friends who offer encouraging words, and Children's Hospital of Philadelphia is, for lack of a more appropriate way of describing it, reasonably nice if we have to go at all. So, there you have it. Your comments of encouragement and support are warmly appreciated. Andrew

Comments

Re: Epilepsy essentially confirmed... next steps

how did your appointment go?IF your not happy with the mind choice they gave you ask for more options.there are alot of choices out there.the only two meds I know of right now that doesnt affect the liver or kidneys is trileptal and lamictal.I don't know if thats a option for you but you can ask.good luck

Re: Re: Epilepsy essentially confirmed... next steps

I'm on Lamictal and have been for two years. It does affect my liver according to my doctor. She said that is why I shouldn't be on birth control/why I shouldn't drink. She said it was too hard on my liver. When I first went on Lamictal I only heard wonderful things about it... but I have to say it's not really cutting the mustard for me. Like tonight for instance... I had a seizure for the first time in a long time, even thought my doctor told me (with all of my conditions and whatever), that I shouldn't have any more (keep in mind I don't actually have epilepsy, just chronic seizures). Also, the most annoying things interfere with the absortion of it, including menstruation.

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