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Daughter diagnosed w/Juvenile Myoclonic Epilepsy
Fri, 01/28/2005 - 03:40Topic: Family & Friends
My 14 year old daughter was recently diagnosed with JME I was wondering if there was any one out therewho is about the same age she could converse with about this and to let her know she's not alone. She recently had a tonic-clonic seizure and happenedto be in the shower,I heard her fall and came bolting thru the bathroom door to help her the few seconds she was lying there she had already sucked in enough water to cause her to start to drown,her lips were blue. Iwas terrified beyond belief and almost lost control.I soon got composure and and bent her over she spit up all the water she took in.She woke up a little bit later.Still in the tub,she had no idea what happened,this was her first Grand Mal seizure. I talked to her doctor and he has her on Lamictal. So far so good. And we now are getting info on Safety,And everything else. As a mother is there anything I need to know aboutthat I should know from anybody who has JME... Forgive me as I'm new to all of this and any info would be greatly appreciated.
Comments
RE: Daughter diagnosed w/Juvenile Myoclonic Epilepsy
Submitted by Beccajc on Tue, 2004-05-18 - 04:39
I was diagnosed with JME at the age of 15, suffering a grand mal seizure after an intensive exam revision session and lack of sleep. I was immediatly put onto sodium valproate and am happy to say that at the age of 24 now, I have only suffered around 5 seizures in total (2 of those were also whilst in the shower in the morning and after reducing my medication). Its a very distressing time at the moment but once JME is controlled, your daughter can carry on as normal. I thoroughly enjoyed my teen years and I even experienced a period of 6 years seizure free. I hope this provides you with some reassurance.
RE: Daughter diagnosed w/Juvenile Myoclonic Epilepsy
Submitted by ktamos on Tue, 2004-05-18 - 07:00
I am happy to hear that you are doing so well. I am curious, did you ever have any reactions to the medications that you take? I think the dr. will be prescribing depakote- a form of valproic acid. I've read that some people have a hard time tolerating this med and that there are some unpleasant side effects. Thanks again for the reassurance -- it's so nice to hear good news!
RE: Daughter diagnosed w/Juvenile Myoclonic Epilepsy
Submitted by ktamos on Sun, 2004-05-16 - 21:46
My daughter also has JME- she had her first tonic clonic last Aug. at age 15. For several months prior to this she would complain that her arms would "jerk" in the mornings as she was getting ready for school. It didn't happen on the weekends so I assumed she was just rushing and it was nerves. After her first tonic clonic she was diagnosed with JME- we have been seeing drs. and reading everything we can get our hands on concerning this. (It's also called Janz Syndrome) I think my daughter might be interested in talking to someone who shares her same experiences--- we have yet to meet anyone who has this particular type of epilepsy.A few things I can share with you that we have learned-sleep is critical to my daughter-- she is on a modified school schedule because it was impossible for her to awaken at the necessary 6 AM. We also try to limit caffeine- and diet soft drinks, sugar, etc- a healty diet is good for anyone. She is not on a medication yet- we were hoping she wouldn''t have to take any, but just two weeks ago she had a second tonic clonic- this was while she was sleeping. We will meet with a dr. in 2 weeks to discuss the results of a 16 hr eeg we had done last week. Have you been in contact with any epilepsy foundations in your area? They were a tremendous help and a wealth of information. Try to locate an office close to where you live. How is your daughter dealing with school? Do you notice if she has any problems concentrating? Is she having any side effects from the medication? Sorry I have so many questions, but you don't get to talk to that many people who have JME. Take care.