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Old 07-21-2008, 12:38 PM   #1
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Seizures starting at 16 yr. old mainly in the morning

I am trying to get all the info. I can for my 16 yr. old son who started having seizures in January. At that time, he started taking Lamictal 100 mg. twice a day. Since then, his arms twitch or jerk if he is tired, which he didn't tell us about until his second grand mal (Tonic Clonic?) on July 4th. We believe he had a seizure in March in the early AM, but nobody was around to observe it. He got up early for a volleball tournament by himself, and while waiting for his coach in the car, woke up totally disoriented, nauseated and weak. He hadn't bitten his tongue or anything. He may have just fallen asleep, but the symptoms afterwards bothered me. Obviously, the Lamictal isn't doing the trick or we need to get him on a higher dosage. We want to find the right meds without overdoing it. He sees the neurologist again this Wednesday. Any recommendations? We have no history of migraines or seizures on either side of our families, and he has had no brain injuries.

Last edited by draked1; 07-21-2008 at 12:40 PM.

 
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Old 07-23-2008, 10:32 PM   #2
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Re: Seizures starting at 16 yr. old mainly in the morning

The neurologist thinks he has Juvenile Myclonic Epilepsy. Does anyone have any experience with this?

 
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Old 07-24-2008, 09:38 AM   #3
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Re: Seizures starting at 16 yr. old mainly in the morning

HI there, I am basically in the same place you are. I know how you feel and I know this is not much but I just wanted you to know you are not alone. My sone was diagnosed with JME in january too. He was 14 at the time. He had his first in the lunchroom before school.

For Sidney, his triggers are body stress, such as overworking, staying up too late, not getting enough sleep, sickness. AND not remembering his pills. I try to remind him all the time but it seems like I just cannot be there ALL of the time. He is such an independant boy that sometimes I just assume he has already taken it.

Talk to your son and try to find out if he is skipping his meds, or if he has figured out any of his triggers. Then you can try to avoid these as much as you possibly can.

HOpe this helps some


(((HUGS)))))

 
Old 07-24-2008, 07:19 PM   #4
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Re: Seizures starting at 16 yr. old mainly in the morning

Thanks for the input. Interestingly, I just replied to your message before I checked my own. He is good about his meds, but the neuro. is changing him to Depakote because he was just diagnosed with JME. We're going to give this a try and see if it works better. He has the TC seizures in the morning if he hasn't gotten a full night of sleep. The jerking happens when he is tired. I'll let you know (it'll take a while) if we see better results on this med.

Last edited by draked1; 07-24-2008 at 07:22 PM.

 
Old 07-24-2008, 07:24 PM   #5
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Re: Seizures starting at 16 yr. old mainly in the morning

I just looked at your location after I replied. Are you LDS? Just curious because I am.

Last edited by draked1; 07-24-2008 at 07:24 PM.

 
Old 07-24-2008, 08:07 PM   #6
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Seizures starting at 16 yr. old mainly in the morning

If he hasn't started yet, have him keep a journal for his seizures and related. Write down any "odd" symptoms he may encounter when changing meds, or whatever. This includes anything and everything. Write down when meds are changed, write down levels and when blood tests are (or you do that!).

It helps to evaluate month to month if your seizure frequency has changed, or if the drug therapy has made any improvements when you scan back in the calendar.

Depakote was one I didn't really care for, it didn't work well with me; BUT THATS ME. When transitioning between medications that is a time that seizures may occur. However the doctors won't know if we are having problems unless we tell them. By keeping a log of symptoms (if any) this helps us remember when we had seizures (if any) and what symptoms we experienced (if any).

Depakote when I was on it for a year or so added a good 20-30 pounds by itself. I lost that weight when I was taken off the medication. It also thinned my hair.

Every medication has it's own side effects. Some may make you tired, some may agitate the person, other may cause weight loss. It all depends on the medication and how they act with the patient.

--Travis

 
Old 07-24-2008, 08:19 PM   #7
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nomorenekkiddog HB User
Re: Seizures starting at 16 yr. old mainly in the morning

Sidney is on Keppra and it seems that it works if he takes it consistently. I wouldn't let them put him on depakote to start out because I have a friend that has Bi polar and has taken it and had lots of problems on it. So I told him no way. He wanted to start on keppra anyway, thank God.

Travis, that sounds like a good idea about keeping a diary. I have been keeping his records all in one place for him already. But I never thought about having him keep one on his seizures. That may help him figure out a way to keep track of taking his meds also.

 
Old 07-24-2008, 08:21 PM   #8
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Re: Seizures starting at 16 yr. old mainly in the morning

draked1 I replied to your answer on "my" post.

 
Old 07-26-2008, 09:57 AM   #9
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Re: Seizures starting at 16 yr. old mainly in the morning

Quote:
Originally Posted by Travis from MN View Post
If he hasn't started yet, have him keep a journal for his seizures and related. Write down any "odd" symptoms he may encounter when changing meds, or whatever. This includes anything and everything. Write down when meds are changed, write down levels and when blood tests are (or you do that!).

It helps to evaluate month to month if your seizure frequency has changed, or if the drug therapy has made any improvements when you scan back in the calendar.

Depakote was one I didn't really care for, it didn't work well with me; BUT THATS ME. When transitioning between medications that is a time that seizures may occur. However the doctors won't know if we are having problems unless we tell them. By keeping a log of symptoms (if any) this helps us remember when we had seizures (if any) and what symptoms we experienced (if any).

Depakote when I was on it for a year or so added a good 20-30 pounds by itself. I lost that weight when I was taken off the medication. It also thinned my hair.

Every medication has it's own side effects. Some may make you tired, some may agitate the person, other may cause weight loss. It all depends on the medication and how they act with the patient.

--Travis

 
Old 07-26-2008, 10:09 AM   #10
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Re: Seizures starting at 16 yr. old mainly in the morning

Thank you so much! This is very helpful. He has had no side effects with Lamictal, but is on a fairly low dose. The Dr. increased him to 400 mg/day until he gets back from vacation. I will ask the Dr. about Depakote and the side effects. That definitely concerns me. The journal idea is also really good. Maybe we can try just increasing the Lamictal or try the Keppra. Thanks again for your help.

Last edited by draked1; 07-26-2008 at 10:11 AM.

 
Old 08-14-2008, 10:31 AM   #11
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Re: Seizures starting at 16 yr. old mainly in the morning

Hi there! My concerns and prayers go out to you. I am 20 and I have had seizures since after my brain surgery about 10 years ago. I have simple partial seizures and take lamictal 100mg twice a day. My Neurologist said that he can increase if need be. However I have been on it for a very long time and have had no side effects and my seizures have decreased. I am happy with it overall and I want to encourage you not to worry. The only negative thing I have heard from the doctors is that for woman it may cause birth defects. However, you do not have to worry about that Good luck with everything!

I also recommend keeping a journal. This will make things a lot easier for the doctors. I did not start doing it and I could not always remember when it was and what I felt during the seizure.

Ashley

Last edited by kashley88; 08-14-2008 at 10:33 AM.

 
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