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denawe

School Accommodations for Absence Epilepsy?

My 8 year old son was diagnosed with Absence Epilepsy two months ago, and while we've seen a reduction in the number of epsiodes with Zarontin (ethouximide), the seizures continue.  We've had a terrible time getting any help from our neurologist - we have an appointment with a new doctor next week and are hoping for a better response...

In the meantime, my son - who has always been a great student (excellent grades, good behavior, participates in the gifted program) - is now starting to struggle in school.  His teacher is asking for a 504 plan to make accommodations for him, and I need some help in determining what types of accommodations we should be asking for.

Does anyone have any advice as to what accommodations should be made for a child with Absence Epilepsy?

He's having focus issues, poor memory recall, generalized "foggy" days, and of course, missed information and blank holes in tests due to seizures.

Due to a lack of information from the neurologist, I have nothing to really share with the school regarding how the epilepsy affects his schoolwork and why.  Are the "foggy" days due to the medicine, disruptions in his sleep, or just from multiple seizures?

I've learned a few things on my own - behavioral things, like not approaching him when he's having a seizure.  From his point of view, I was 20 feet across the room, then when he came out of it, I was just 6 inches away - I'll never forget the look on his face that day!

Any other tidbits of information you can share that would help us make life easier for him while we try to find the right medication?

Thanks for your advice!

Comments

Re: School Accommodations for Absence Epilepsy?

Hi there my name is Katie and I've got absence epilepsy. I wasn't diagnosed until I was in High School so things were opposite for me than they are your son. I am a very high functioning epileptic, so everyone always thought I just had a hard time focusing. My best advice to you would be up front with teachers and counselors. In my senior year of school my Mom and I went in a couple days early and spoke personally to all the teachers, told them what to expect and how I might act. I used to take a few minutes to myself if needed, I took tests separately if needed. And always had someone to come to. I don't know where you live, but I know that having a good neuro is a HUGE support. I've been to 3 and now that I have found this last one, I wouldn't change for the world.
Good Luck to you both!
Katie

Re: School Accommodations for Absence Epilepsy?

Hi there! I'm in your shoes as well. My daughter was diagnosed with Absence Epilepsy a year ago this month (she is 6 now) and has blown thru a ton of medications. We started on these and they are in order: Zarontin, (generic Ethosuxamide), Lamictal, Depakote, Clonezapam (rescue med) then Zonisamide and last week we just switched to the brand name of it Zonegran. Phew those are a mouthful!

Anyhow, funny I found your post because I just received a Section 504 for my daughter as well from her teacher on Friday. Actually filled it out tonight before I hopped online! I called several of my friends who are teachers today and it sounds like it's a very smart idea. There is not a negative cogitation to them and I think it will be the best thing we can do for our children in this situation.

I haven't had my evaluation with the administrators yet but it sounds like she will receive extra help in classroom, receive extra time on tests, etc. I figure any additional assistance would be better than none.

Right now we are struggling with her withdrawling from activities and not wanting to even go to school. She is very aware of her seizures and very self conscious about them. She has an awful itching (without rash) right now on her scalp and back. She also does not want to eat and all of this due to the medicine. We had two blood tests last week for elevated liver enzymes and histamine but they both came back negative. She complains of a tummy ache about once a week and takes Zonegran 100mg 2xday. Really hoping we find the right meds soon.

Sounds like you may need to change doctors...he should provide you with any information you need for the school. I just filled out over 9 pages of paperwork including her 504 paperwork. I didn't specify what her symptoms were caused by but better yet listed ALL her symptoms and what medication she was taking. I'll let them sort that out...

I'm not sure if all my rambling helped in any way but feel free to email me anytime! Best of luck to you and your son!! Tlo

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