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JME

Tue, 10/09/2007 - 12:29
I'm looking for advice/opinions for my 14 year daughter. She is 14 and extremely bright. She had a grand mal seizure on July 2 at 1:00 a.m. She had fallen asleep in the living room and wouldn't go to bed when I woke her up. When she finally did go to her bedroom, we heard a loud thump and found her on the floor. By the time we got to her, she wa done shaking and was unconscious so we didn't know she had a seizure. We took her to the ER and they said she was dehydrated. Several months prior to this, she began having arm jerks after waking up. If she was holding anything, she would drop it. I took her a neurologist in August. He felt strongly that she had a seizure in July and sent her for an EEG. The technician that performed the EEG told us she has absence petit mal seizures and would outgrow these after a few years on medication. She said that she sees these type of seizures in very smart children. Went back to the neurologist and he said he suspects JME and that she won't outgrow it. He then ordered a 12 hour video EEG. During the video EEG, the neurogolist on call started her on Keppra. So, when she woke up, she didn't have the arm jerks. However, 3 days later she had another grand mal seizure. She is now on 1000mg of Keppra. The large arm movements haven't happened, but her hands move all of the time. They are almost like a fumbling/twitching movement. I have been calling the neurologist for a week and can't get him to call me back. I haven't really even talked to him since the video EEG to get the results to know what we are dealing with. In fact, he doesn't even want to see her for 4 months! Does anyone have any suggestions on these hand movements that she does? I don't know if it's the medicine or the JME or if she even has JME!

Comments

I am a mom of 18 year old

Submitted by ssuuzzyy on Mon, 2007-12-03 - 17:19
I am a mom of 18 year old boy who was diagnosed with JME when he was 16 so I understand what you are going through. He also had his first seizure in the shower in the early morning. It will get better. Life will never be the same as it was but you will find that there is a "new normal" that you get used to and accept. Overall, my son is leading a very normal teenage life. His friends all know what happened; they were very concerned and have been great. I think if you are up front with them they will understand. He even takes his medication in front of them or tells them he has to stop home to get it if he will be out late. He couldn't drive until he was seizure free for 3 months, which was frustrating for him, but his friends all took turns driving him wherever he needed to go with no complaints. He is on Depakote ER and has not had another seizure or any myoclonic jerks. There was a 4-6 month period of adjustment to the medication during which he was very tired but then he got back to feeling "normal." He went to his junior prom and stayed out until 6 a.m. and didn't have any problems. He ran 40-60 miles/week all summer to return to his cross country team his senior year as a top 5 runner and make it to the state meet. He is going to college now 1.5 hours away. He rooms with a friend of his who is fully aware of his situation. We, of course, still worry a lot but our anxiety level has gone down. Probably the hardest thing for them to do is get consistent sleep or enough sleep. Your daughter can lead a normal life with school, friends, job, marriage and family, and there are other medical conditions that are worse from a health standpoint, such as diabetes. Keep strong and give yourself time to become adjusted. Good luck! Suzy ------------------------- Suzy Mom of 17 year old boy diagnosed with JME on 11/23/05. Originally on 1000 mg Depakote ER nightly; reduced to 750 mg 12/29/05.Mom of 18 yr old boy diagnosed with JME in Nov 2005.

Re: JME

Submitted by Mel hates JME on Fri, 2007-10-12 - 20:29
Hi I was also diagnoses with JME, and when I am going to have a grand mal seizure I usually am more twitchy, maybe that is it? I don't know I am so sorry I am very new to this epilepsy thing as well, your daughter is a year younger then I am and so I understand what she is going through, I hope she is dealing with this better then I am, so I hope you the best of luck, and email me for whatever reason, I am alone in this even with a supporting family, and loving friends, maybe she feels the same?

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