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Help with questions

Sat, 08/12/2006 - 09:07
Hi all. I haven't posted in a while but need some input. My 13 year old was dx with E in April after her 2nd CT in a week. We have tried topamax (couldn't tolerate the side effects), then depakote, now keppra with hydroxyzine. Shortly after her first couple of seizures, she has complained of a "pulling" toward the right. (BTW, her seizures always pull toward the right). This pulling, she felt, was always in her eyes. We had a second sleep deprived 25 minute EEG and the doc said it's not seizure activity. This pulling is basically contant for her. The neuro believes its a dystonic movement disorder. Now, in the last week, I have noticed a twitch toward the right in Becca's mouth. We still do not have the seizures under control. She has about one TC per month. They are pretty severe....4-5 minutes..she's out (well, at least I think they look and seem severe). MRI is clear. Now, here is the question. I just am not yet comfortable with the dx of a movement disorder. So, yesterday, I went to her family doc and picked up all the notes that the neuro had sent to them. The EEG reports state the following: (edited) 3/28 "after 10 seconds first polyspike and wave discharge occurs. 10 seconds later a 2 1/2 second burst of polyspike and wave. She has a rather odd background with her eyes open with alot of fast activity which is low amplitude. During first bout of photic stim, burst of polyspike and wave. Just under 1 minute of hyperventilation, impressive burst of polyspike and wave. This pattern is similar to, but not identical to both simple and comples absence seizures. She makes rapid tranistion into stage1 and then stage 2 sleep. Unquestionable epileptiform discharges noted. Further into sleep, impressive slow spike wave discharges appear without a leading focus. Epiltiform discharges are quite a bit less in sleep than in the waking state. IMPRESSION: Abnormal EEG which is for the most part, consistent with primary generalized epilespy with some evidence of leading frontal focus." Now, notes from Neuro on July 26th state the following: (again edited) "We talked quite a bit about possible patho-physiology of movement disorders and all recalled that her very first major siezure was a partial one with generalization likely beginning in the right hemisphere and her EEG goes along with that, although I still think there is a good chance of juvenile myoclonic epilepsy" So, is this JME, and if so ---why is the "pulling" and now the mouth thing happening ALL the time? If it is JME, should she be on Depakote? He took her off of that, becuase he initially thought the depakote was causing a the "pulling" she feels? I love this neuro. He is INCREDIBLY kind and really cares about his patients. I also know, however, that we live in a smallish town with only 2 ped neuros and am wondering if I should be taking her to the epilepsy center at UVA. This is all so new. I don't know what "normal" is. Any suggestions? I'm so tired. Becca is starting high school as a freshman next week and I was really hoping we would have a better idea of what is going on and better seizure control. All of her CT's are in the morning, which fits with JME....

Comments

Re: Help with questions

Submitted by PETER on Mon, 2006-08-28 - 06:40
this is peters mom from new jersey ,do not just listen to one doctor please get a second doctor take the records you have and see if the other nuero feels the same way,i went through 4 doctors before we got results its your child,even if that dostor is nice.GOD BLESS YOU, KAREEN

Re: Help with questions

Submitted by Essie on Mon, 2006-08-28 - 07:12
Hi, My son was diagnosed with JME 2 weeks ago. I'm still new to this and have no idea to help you, sorry. But would you please keep us updated? Because my son also has this twitch in his right cheek. Always on the right side. It influence his right eye, which he sometimes screws up during the twitch. He also complain sometimes that his right eye is "jumping" or twithing. He's neck jerks always comes from left to right, and his absences is always a roll of his eyes from left to right. They said his epilepsy has a starting point which is a bit to the left, on the centre front of the head. Not the frontal lobe. About where a baby's fontanelle is. I have no idea what that means... Take care, Essie (mom to Nian(5))

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