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14yo son w/ JME

Mon, 03/14/2005 - 20:41

HI all.. I am new here and looking for some info. My son had a tonic-clonic in May 2004. He actually had 3 in 1 week but we didnt know about them until the 3rd one. I saw it myself and it was the scariest moment in my life. He spent 4 days in the hospital with normal EEG and MRI. But the docs decided that 3 seizures in a short period meant he would be treated with meds for a limited amount of time. He was given dilantin for 3 mo. Then they switched him to Depakote 3x a day. In Sept we expressed how it was hard for him to take it that often becuz he was in school and playing sports after school and finding that he was tired alot. So, they switched him to Depakote ER. He takes 1000mg at night before bed. He has had no T-C's at all! BUT since Dec, we have noiticed he was sluggish, tired, and just not himself. His levels have been checked with no problems so we decided to keep things the way they were for a while.

A few weeks ago, my dh and I were talking to our son, as he was laying on the couch. It seemed as though he was looking at us but wasnt hearing us. A few seconds later, he "snapped" out of it himself and said "huh? what?"  I didnt think much about it, but became concerned when it happened again in the car less than a week later. And I got news from 2 of his teachers that he was failing thier classes. He has ALWAYS been an A-B student who didnt have to try very hard. We contacted his neuro ASAP and luckily we had a scheduled appt the week after so we discussed alot then.

Her theory is that he has JME and he could be having absence seizures in school. She also thinks he could be a little depressed. This concerns me ALOT! Everything I have read mentions depression, but doesnt say its a normal side effect. We are trying to find a therapist to help him and trying to work with the teachers but some of them just dont seem to care.... but I wont go into that! He is the type of kid who can be hard on himself ifhe doesnt do well, so failing 2 classes can be putting alot of stress on him which can cause more seizures. He also is a very good athlete and will be the starting pitcher for JV this year. If he fails he wont be allowed to play - which will cause more depression! CAN ANYONE TELL ME IF THEIR TEENS HAVE EXPERIENCED THIS AND WHAT YOU DID TO HELP???????   It breaks my heart to see him struggle so much. We have a sleep deprived EEG scheduled in 2 weeks but the 3rd term ends in 4 weeks and I need to help him ASAP. PLEASE HELP! And if anyone has a similar story, I may be willing to let him communicate with them so he can know hes not alone! THANKS!! :)

Comments

RE: RE: RE: RE: RE: RE: RE: 14yo son w/ JME

Submitted by insaneskittle on Mon, 2005-03-14 - 11:38
Hey all. I wanted to add to this discussion because I am currently 14 and with seizures. I know what he is going through. The sleepness, school, doctors. In all of this make sure that he can talk to you and be sure to support his decisions. With my family i couldn't talk to anyone and i felt icolated. If you or he need someone to talk to around his age e-mail me at insaneskittle90@yahoo.com.

RE: RE: RE: RE: RE: RE: RE: RE: 14yo son w/ JME

Submitted by 2caret on Mon, 2005-03-14 - 11:49

hey insanskittle,  thanks for replying! I'm so glad you told me to make sure he talks..... its interesting becuz we have been talking alot in the past week adn its amazing how much better things are with him, emotionally! I'm sorry you feel like you didnt have anyone to talk to. I hope that you can find someone who will listen to you and give you the support you need. (other than all of us here)  Good luck to you!  :)

hey insanskittle,  thanks for replying! I'm so glad you told me to make sure he talks..... its interesting becuz we have been talking alot in the past week adn its amazing how much better things are with him, emotionally! I'm sorry you feel like you didnt have anyone to talk to. I hope that you can find someone who will listen to you and give you the support you need. (other than all of us here)  Good luck to you!  :)

RE: RE: RE: RE: RE: RE: RE: 14yo son w/ JME

Submitted by 2caret on Mon, 2005-03-14 - 11:57

willsmom, thanks do much for the things to watch for! Why dont the doctors tell you all this?? I feel like they only give you answers to the questions you ask and dont offer any other info unless its bad news.....

I also just found out she's on vaca til the 27th so we wont have the results of his EEG til she gets back! I found out becuz I sent her an email and I got the auto-reply saying she was out of the offive til then. uugh! Until then, I will keep my eyes and ears open and check the foods that hes eating too!

I'm also curious about something... when do you know its time for your child to wear an ID for epilepsy? Is there something else that boys can wear instead of the bracelet? I know my son will not like having that on his wrist reminding him and everyone else everyday. Our neuro has never mentioned one so I'm guessing that its not necessary, but if he has to take it for atleast another year (or for life) shouldnt he have something???

And, 1 more.... how do you know his B12 is low?? Can they ask for this when getting dep levels or can I ask his pedi to check?? Just curious....  THANKS!

willsmom, thanks do much for the things to watch for! Why dont the doctors tell you all this?? I feel like they only give you answers to the questions you ask and dont offer any other info unless its bad news.....

I also just found out she's on vaca til the 27th so we wont have the results of his EEG til she gets back! I found out becuz I sent her an email and I got the auto-reply saying she was out of the offive til then. uugh! Until then, I will keep my eyes and ears open and check the foods that hes eating too!

I'm also curious about something... when do you know its time for your child to wear an ID for epilepsy? Is there something else that boys can wear instead of the bracelet? I know my son will not like having that on his wrist reminding him and everyone else everyday. Our neuro has never mentioned one so I'm guessing that its not necessary, but if he has to take it for atleast another year (or for life) shouldnt he have something???

And, 1 more.... how do you know his B12 is low?? Can they ask for this when getting dep levels or can I ask his pedi to check?? Just curious....  THANKS!

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