High School and myocolonic

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

P

pattid12

New
Messages
29
Reaction score
0
Points
0
Hi my son 15 years old is in high school. Just diagonsed with juvinile myocolonic. I have a hard time getting him up for school, and when I do he is jerking too much, that I get nervous and let him go in later. Does anyone else have this problem in the morning. Will start meds next week, since doctor not in this week. Anyone have tips on what to do to get him to school on time?
 
My daughter is also 15 with jme. We for sure have a strict lights out on school nights. She has to be in bed by 9:30. Our mornings are no longer rushed and crazy ( like they used to be!). Once I wake her - she doesn't use her alarm :( - she lays in bed for a good 15 minutes before she gets up. She never jumps up out of bed-always slow to rise.

We are 1 year into our diagnosis. Ask any questions. I will try to help! Best of luck with everything!!
 
Another note ... Have you sat down with the school nurse and developed a health plan. We had a health plan in place until we were able to schedule a 504 plan. The 504 plan covers any tardies we have (lots!!) and also talks about other school issues that could be effected by her jme. I did a lot of research on 504 plans and also a teacher so if you have any questions .. I can share!!!
 
Hi, and thanks for the advice! I try my best to do what you do, but I know he doesn't get enough sleep. Just wondering if your child is on any medication. I see the doctor on Wed, for followup on all the tests he had. Thanks
 
Yes, Paige is on medication. She takes 300 mg of lamictal XR. That medication starts at a very low dose (25 mg) and you slowly increase to your therapeutic level. Paige leveled off at 200mg and we had to increase a couple of times since we did not have good control. She still has morning myoclonus but maybe once per week and only 1-3 jerks ( as we call them). Let us know how the appointment goes.
 
Thanks again, will let you know how appt goes. Does the medication have any side effects?
 
Specifically to lamictal, the number one thing to watch for is a rash. It is my understanding that there can be an allergic reaction rash or the much, much less common Steven Johnson syndrome rash. There are other side effects to lamictal but the only ones Paige has had is dizziness upon standing (mostly when we up her dose but then it goes away after a few days) and nausea (learned she needs to take Meds with food and now that is gone). Other than that we have not had any other effects. Do you know which med your son may be starting??
 
Don't know what meds yet, appt is Wed for Neuro to go over all results. Dr. did say over the phone that he saw spikes on the EEG.I do notice that he doesn't have these jerking movements on weekends when he is able to sleep enough. Can't thank you enough for this info will keep you informed
 
No problem! Paige was having absence seizures that we never saw! The EEG showed those. I felt like such a bad parent not noticing! She also has myoclonus- which I saw and still see on occasion. To date Paige has not had a tonic clinic. Knock on wood. We pursued what was going on because Paige felt these morning jerks were not normal. I ignored her at first (bad mommy) but one morning they were bad enough that she fell. 2 days later I hear the words jme for the 1st time.
 
Just thought I'd give you the view from the other side. I was the high schooler who always went in late. It was super embarrassing walking into class and having everyone stare at me, some knowing why and some thinking I was just a loser who always skipped. My best friend was the school nurse because I was always with her. I was an honors student, so I fell behind quickly and ended up having to get my GED. It was the hardest thing that ever happened to me; I had to go on anti-depressants afterwards. I know as mothers seeing your kids miss school must be frustrating, but it's no picnic for them either. Just please be gentle when you sit dow with them to set rules for lights out and things like that.
 
Thank you for your information. I'm trying to get him to wake up earlier. Now with the clocks going back soon, I'm even more worried. High School kids have alot of time off, so when he does get in a routine for school, then they have 3 or 5 days off. Thank for your support!
 
You must log in or register to reply here.
Back
Top Bottom