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confused924

JME

Topic: 

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

Re: JME

I am sorry that you and your daughter are going through such a hard time. I do not know much about JME but there were several things in your post that resonated with me.

The first one is that your daughter apparently has lack of sleep as one of her triggers. For a teen that can be rough. I always equated having to go to bed at a reasonable hour and get up at a reasonable hour with being a baby. It is a right of passage to be able to stay up late and sleep in. I am afraid that will always be a bad idea for her, even if she does out grown it, as I did. College was rough for me bcause of this.

Second, a doctor that will not call you back is not worth your time or your daughter's health. Find a new doctor. Growing up we treated the neurologist as if he was a god. He was not and is not. Find a doctor that returns your calls, explains clearly why he/she believes your daughter has JME or not, gives you resources other than himself for guidance and assurance. You have a RIGHT to a second opinion, or a third.

Don't ever doubt your mother's intuition. Also, what does your daughter think is going on? Never to early to involve her in her own advocacy and care.

God bless,
Kelly

Re: Re: JME

You are right -- she doesn't like having to go to bed at 9:30 every night -- even on the weekends. But unfortunately, it's a way of life now. I have decided to switch her doctor. Although it was like going through hoops to do so. She now has an appointment on October 30. It's hard to know what she thinks. Initially she cried at the thought of having to take medication every day for the rest of her life. I can't say that I blame her -- she's only 14. She has gotten better with taking her shower at night. I make her do that now since her last seizure was in the early morning while taking a shower. Talk about scarey. But, when I try to talk to her about it, she gets upset and says she doesn't want to talk about and she's fine. It's so hard to try and be normal around her -- I'm constantly looking to see if her hands are shaking and wondering if she knows whether or not they are shaking. Then I worry about the kids at school -- if they see her hands shaking and if they are teasing her. I'm probably having a harder time with this than she is. Oh well, I just pray everyday that we get through the day without a grand mal seizure and that she will get better. I'm going through a guilty period right now because when her hands would jerk after waking up and she would drop things I would yell at her to stop it. I would even show her what she looked like while she was doing it hoping it would make her stop. I never ever thought she had epilepsy and now I feel like crap.

Re: Re: Re: JME

My mother has been doing the same thing to me, and I respond the same, it's hard to handle this, and it's even harder trying to accept it, I still have issues talking to my mom about it, I feel like I have to be strong, and just suck it up, and I get so angry with myself, even my hands shake(I know last post I said otherwise, but I do, sorry) It's annopying and it frustrates me, but no one makes fun of me, kids are still cruel, but know where to stop, she is proably having a rough time, and feels like she's cried enough, I feel the same way, as for the bed time thing, my mom did that at the beginning, but you have to give her some freedom so she can set her own limits, she seems like a sensible girl, and it's easy to tell when to stop, she won't make it that much past 9:30 anyways, and if she does, she can always take a nap after school =), you have to understand how she feels, I know it's hard, but you have to give her her space, my mom is crushing me, and revoked all the freedoms I had worked so hard to get, it DEVASTATED me, she still does it, and it hurts, it feels like all the trust goes away because your different, just be there for her when she needs it, and she will come to if she needs to, but if she is like me she confides in her friends, just because they have a different way of talking to her then you do, it's not a bad thing, it's just in some cases easier to do, the medicine thing devastated me as well, it's highschool, you have to work hard in school, and standing out is a hard thing, I try so hard to be normalish, and when I found out I had epilepsy it devastated me knowing for the rest of my life I'm going to be worrying about my medicine whether or not I am going to have a seizure, blahblahblah, it's really hard, and it's even harder trying to juggle teenage problems with it, right now, she doesn't understand it will get easier in time, neither do I, and it is very hard to accept this big of a change in the small amount of time they give you, like just now my step dad came up to check on me, and now I can hear them downstairs talking about me, it feels like I've been reduced to the age of 5, Melanie don't do this, Melanie you can't do that, Melanie we can't go there, the night of my birthday I had a seizure, and the day after that, I was in constant panic, it's just she's trying to accept this and she isn't ready to yet, epilepsy doesn't balance out with your life, it consumes your life, no matter how much the doctors tell you not to let it, that's what my life has been reduced to, maybe she feels the same? There isn't much you can do, yes you should worry, but know she IS fine, and just having a rough time

I am a mom of 18 year old

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

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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

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?