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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 ktamos on Tue, 2004-05-18 - 19:15
To Rhea; It is so interesting sharing some of this information with you. My daughter would like to write to your daughter- I think it would be great for both of them. There is a reason I was asking about how your daughter coped with school. My daughter always seemed to have problems concentrating- I even thought for a while that she had attention deficit. After her JME diagnosis, I learned that absence seizures can occur one to nine years before the onset of myoclonic jerks. I really believe that my daughter had these absense seizures during all of her elementary school years. On so many occasions she seemed oblivious to what went on during the school day. She would try so hard, and I would spend hours helping her study to just acheive average scores. My daughter also seemed to be a late bloomer. She matured very slowly and was always really small for her age- and I always thought that she processed her thoughts very differently but just couldn't pinpoint what was wrong. When your dughter had her first tonic clonic seizure, did it happen in the morning after a she had a lot of arm jerks? I noticed that my daughter needs 9 or 10 hours of sleep a night. I am also observing that certain times of the month she is more vulnerable to seizure activity. Try and record when she has jerks, seizures or staring spells. I am glad to hear that you have health insurance now. I have found that it is extremely important to find a doctor who is compatable with the way you think. The Pittsburgh epilepsy foundation told me to find a dr. who was willing to take the same risks that you are--Good advice! (We have been to three- they all had different opinions) The last neurologist is a pediatric/adolescent specialist and i really agreed to his approach to medication. Before prescribing, he did blood work and liver tests to get a base line to work from. These meds are extremely powerful, and its critical to keep your daughter's blood levels carefully monitored. Many of the meds that control other forms of epilepsy can actually aggravate JME- valproic acid is the recommended drug. He then did a 16 hour EEG to check to see if she was having absense seizures- we haven't gotten these back yet. How are you dealing with all of this? Keep reading and educating yourself with as much information as you can. Maybe the national epilepsy foundation can put you in touch with the foundation closest to your city. They were wonderful to me and answered so many of my questions while we were waiting to see doctors. Take care!
RE: Daughter diagnosed w/Juvenile Myoclonic Epilepsy
Submitted by Rhea1965 on Wed, 2004-05-19 - 08:30
To ktamos; Hi, Nice to hear from you.Well I agree with you my daughter has had problems as well since elementary,especially while tryng to communicate if she can't get out what she is trying to express she gets very frustrated.and she'll forget as soon as she almost starts to say something. And it's hard for her to problem solve. What was the 16 hour eeg for absense seizure? we have had blood,urine,mri,and an eeg done.Her dr. is a pediatric nuerologist at cook childrens,he said her eeg was myoclonic "off the charts" I'd like to see those charts! Why do I need to watch her blood level,sorry I have no clue,did they supply you with something to do that?? My daughter is very large for her age she will be 15 in Dec,. she is 5'7 and wears a 10-1/2 shoe.She has past me up. Her first cycle was last Dec.,and hasn't had one since,probably not normal? and should I tell her dr.?? I noticed that if she didn't get enough sleep the jerking of her arms were worse, then she was starting to fall several times because her upper legs were jerking and has busted her nose. when she had her tonic clonic last week she said before she blacked out her arms started jerking really really fast,& then she couldn't remember any thing.I think she missed her dose of medicine the night before she had that tonic clonic.we now have pill boxes to monitor her on her meds.I have started to log all of her falls or anything else that may be related to this. Is your daughter now on valproic acid? Is that also called Depakote? Her dr. told us that if she continued to have these seizures when he got her up to the recommended dose (200mg) that he would also put her on another kind probably Depakote. and leave her on that for a couple of years and then take her off the medicine to see if she'll have an atttack if so then she'll go back to square one. I'm handling this okay I guess,I pray alot so that keeps me up. My son is really upset. How about you and your family are you all okay?I'm contacting the epilepsy foundation now to see if they have something closer to us. Take care!
RE: Daughter diagnosed w/Juvenile Myoclonic Epilepsy
Submitted by Rhea1965 on Tue, 2004-05-18 - 11:27
To ;ktamos Thanks for writing,I really appreciate you sharing your info. We have not found a epilepsy foundation that is close to us yet. My daughter started having "symptoms" of jerking in the morning over two years ago. She has been homeschooled all her life. Since my family has helped us with the homeschooling also Ihad to go to work, I noticed that she couldn't hold anything in her hands in the mornings,she'd get very frustrated. Last summer I had quit working to be ableto be at home with her a while,since we didn't have any insurance we weren't able to take her to a Dr. I knew she was getting worse and by april we hadinsurance so we now know what she has. The Dr. kept asking if she was conscious when she would have an attack,she said yes.Till last Friday,when she had the tonic clonic. I still have not received my information fromthe Dr. office yet but have gotten loads of info from websites like this. She does have trouble with concentrating and even has problems processing her thoughts to speak she should be in 9th grade this year but have decided to hold her back. I have heard about the ketogenic diet,but I don'tknow how it works. The Lamictal has been good so far,no rashes. But I found out on this website that it's not approved by the FDA? Let me know if your daughter might be interested in writing to my daughter and I willset her up a user ID: on this so she will know who she is. Thanks and Take Care. :)