doomed to homeschooling?

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havaneseday

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My 14 y.o daughter has juvenile myoclonic epilepsy and when I wake her up for school (at 6:45am) she starts seizing. When she sleeps in on the weekends, she doesn't seize much at all. We've tried making her go to bed earlier, but she says she can't fall asleep. I fear (and dread) the idea I may have to home school her because she can't wake up without seizures. I really, really don't want to do this but don't know what else to do. Any suggestions or advice would be appreciated
 
Hi haveneseday.

It sounds like a good sleep schedule is the only option. Lack of sleep can be a pretty nasty trigger. It can be very hard to brake the sleep schedule even for me. I may get 6-7 hours of sleep on a week day, but 12 a night on the weekend. Sometimes I slide naps in. Naps help quite a bit. I believe 100% that your daughter has trouble sleeping on week nights. I always had the same problem (never caused any problems with epilepsy).

Maybe talk to a sleep doctor.
 
Hello! My 15 year old is also diagnosed with JME. We have a 9:30 in bed and 10pm bedtime set for her. She takes 5mg of melatonin each night to help her fall asleep. We are pretty strict on the weekday bedtime and if she goes much past that time, I give her more time to sleep in the morning. Also important for Paige is that we slowly wake her up. I turn the hall light on and crack her door open. 5 min later turn in her light. 5 min later start to say time to get up.

When you say your daughter seizes in the am, is she "jerking" or T-C??

If she needs to be late to school because she needs more time... Get a 504 plan in place. Paige can be tardy without penalty. Also, her homework load us monitored since we have a strict bedtime. I did a ton if 504 research and can share :)

We also follow a low carb, high fat diet which has worked wonders for us. Paige went from 4/5 mornings of jerks each week to one day with one jerk per month and this is aligned with her monthly cycle.
 
Thank you all for the feedback. I hadn't heard of the 503 form which would allow her to be late with out penalty. I will definitely check into this. Currently, she typically has 15 -20 "jerk" movements in the am, but some of them can be quite violent. She's had a few episodes where she'll go into a full tonic clinic. She's still being titrated up on the lamictal but I don't see it working. She takes a small dose of Klonopin before bedtime but it doesn't make her drowsy. I'll check with her neurologist to see if there's anything else she can take to help her fall asleep. She says she feels a buzzing sensation in her for head before the seizures and then gets a wicked headache afterward. Do any of you have these sensations? Just curious. Again, thanks for the feedback. She and I both need a support system with this.
 
Hello again! We are actually having Paige's 504 review in 2 weeks. We review/update it annually. Here are the things we have in her plan:

1. Emergency Care Plan
2. Individualized plan for availability of medication during off-campus field trips. This would include her assigned group having two adults in the event that Paige needs additional sleep, to nap, and/or an adult needs to get her medication.
3. Permitted to keep her cell phone during overnight trips for use in an emergency.
4. Careful selection of roommates for overnight trips.
5. Permitted to use the elevator at school.
6. Permitted to have a peer accompany her when not being directly supervised by an adult.
7. Permitted to have an “epilepsy bag”, provided by the family, stored at school. This bag would include potentially needed items.
8. Permitted time extensions, without penalty, for projects, homework, and tests.
9. Extended time, frequent breaks & late start time for standardized tests (e.g., WKCE, ACT, SAT).
10. Monitoring of tardy arrivals – should Paige find that her health condition causes her to be late often, a request to review/revise this plan might occur.

This came directly from her plan. She was late 80% of the time last year. I just had to call in and they "cleared" her. If you'd like me to send you my research on the 504 plan and her actual plan, private message me your e-mail address and I'll send the forms to you. I am a teacher, too... so I feel confident with how the plan is written and being followed :)

How much Lamictal is she on? What is her target dose? Paige is on 250XR. I think you do need to give the Lamictal time - to get to her therapeutic level. Paige also has ativan for emergencies - if her myoclonics start to cluster she can take an ativan to calm her down. We have had to do this twice.

I know this forum has provided me so much support. I hope you find the same!
 
Thanks Chop56. The mornings are too hard for her so I'm going to do the cyber academy offered thru my state. They provide the text books, she logs in does her classwork and has daily sessions with a live teacher, thru which she communicates via headphones and mics. Hopefully, it will only be for the rest of this school year and she can return next year if the meds do their thing. She's on Lamictal 300 mg twice a day and klonipin twice a day. How long ago was your daughter diagnosed?
 
Paige was diagnosed 21 months ago... 2 weeks after her 14th birthday - she was in 8th grade. She is now 15 1/5 and a sophomore.

The eschool option sounds like a good plan. My son takes an eschool course and really likes it.
 
I homeschool and love it! I know it's not for everyone but there is so much information out there and so many options. If you decide to homeschool and need someone to encourage you, give me yell.
I homeschooled before epilepsy. The epilepsy has nothing to do with it except I don't think now I could send my child with epilepsy (I have a lot of children!) back. He is my baby and I can't imagine the trauma of having a seizure in public, not knowing what happened and then having classmates ridicule you.
 
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Has your daughter been able to get her learners permit for driving? More than any other aspect of limitations, not being able to get her license has been the biggest disappointment for her. In our state, you have to be seizure free for 6 months to obtain a license. Will we ever get there??? Also, does your daughter go on any teenage forums for epilepsy? Cassidy is having a hard time accepting this, but then again, she was diagnosed 5 months ago.
 
Mom210 said:
He is my baby and I can't imagine the trauma of having a seizure in public, not knowing what happened and then having classmates ridicule you.
Click to expand...

I hope your baby doesn't have any seizures in public, but it can happen, even if he is home-schooled. Plus, kids can be cruel regardless of what kind of illness or setbacks they may have. They are just kids, very immature. The key is to educating them about it. I have two kids and when they were in school I made sure I went to the school and educated their classmates about Epilepsy since I am the one with it in my family and I'm the one who has experienced many seizures in public. Keeping it a secret doesn't do any good in the long run. Are you going to keep him so isolated that he doesn't get to go out in public at all?
 
Havaneseday,
Paige will begin drivers ed next month. We meet with the neurologist next week and I am going to ask her about driving (again). At our last appointment she told us since Paige has not had a Tonic-CLonic seizure (only morning myoclonics) she is not worried about her driving. The meds seem to be holding the TC at bay (knock on wood!). Paige turns 16 in February but will not take her test until June (I did not know yo uhad to hold the permit for 6 months before you can take the on the road test) and she is fine with that ... told her I'd rather her take the test when there is no snow on the ground!!

Paige is still somewhat private about her diagnosis - she has told her close friends at school and her "crew" class (a small group of kids who work on team building and community building). I wish she would go to a teen forum but she is just not ready .. even after 1.5 years of diagnosis. I do not push her... there is enough stress with being a teen, academics, sports and the reality of a lifelong diagnosis!

What state are you in?? Did you mention if you are seeing any reduction in her morning myoclonics? Although our neurologist was not 100% for diet therapy, we pushed forward with MAD (working with our primary care doctor and a dietician) and are seeing very good results. We still have her on her meds and will never take them away but the diet seemed to have helped to reduce the number and frequency of her morning "jerks". A recent study showed success for JME patients..

http://www.ncbi.nlm.nih.gov/pubmed/23266114

Beth
 
Why homeschooling?

I went all through school never knowing when I'd have a seizure.
It was worse when I was a teen and I had seizures in High school quite frequently.
Being teased is life, I went through that.
 
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