"E" new to my 8 yr. old and my family - Epilepsy Message Board

reesemom · 10-26-2003, 06:50 PM

This is my first visit to your board. My mom has visited several times and has been great about printing several topics from the forum and passing them on to me. They really helped me understand that their are other people out there with "E."
I am the mother of three boys 10yr.,8yr.,and 1yr.
My eight year old was diagnosed with "E" Tues of last week. He has been treated for adhd for several years and we have changed meds several time with no success.
He has had problems in school, not able to sit still,
disrupting the class, etc. We chalked this up to the adhd. For the past month I have been called to school several times, his behavior was getting worst. The last time I was called I noticed he was shivering, his lips quivering,eyes twitching, totally spaced out to the point of wetting his pants. I drove straight to my gp and he ordered an eeg. I was called back to office the next day to get rees test returns. Yes "E." He always had problems sleeping and even woke up some mornings with his pj's wet and soiled, he cried and couldn't remember this happening. He always talked and had night mares which I believe must have been seizures.
We saw his neuro. Tues and she perscripted depako250er.He still takes the concerta for his adhd. He has absence petit mal seizures, photo sensitive and stress bring them on. His worst seizures
are those that take place at night that is why he has no control. Well that is not quite all I am dealing with. The school sent notes each day after he returned to still complain. I have had it with them.
The nevro faxed a request for 504, so i thought that would help. I had a meeting with the principal and I explained (with the help of this forum) that my son was a special needs child and he was intitled to 504 or what ever else the school would provide. My husband said he was imbarrased at the way I went off on them, well I am not quite finished this issue.
I have a IED meeting tomorrow at 1:00.
Can anyone lend me some advice about what should I ask for? 504, idea, ied what???
Any advice will help so please reply.
reesemom

gypsy · 10-27-2003, 08:19 AM

The rules are different in Canada (where I'm from) so I can't give you much advice there. What I can say is stay strong. Don't let the school "bully" you or your son. As his mother you know what is best for him and you will probably have to fight for that. Don't feel bad or embarrassed, just do what you got to do. Good luck to you and yours, I will be thinking of you.

Lori

LisaGuthrie · 10-27-2003, 11:22 AM

Hi Reesemom,

Sorry, I didn't get to this earlier. I'm sure you are well on your way to your meeting. The best I can offer are my prayers and good vibes and you've got em'.

Please let us know how this goes for you.

There are several threads on the site that talk about IEPs. We haven't had to go there yet with the kids.

I had a really rotten time getting help with Jenny. For years all I got from the teachers was it's her home life. She needs more stability, etc. Jenny was finally diagnosed with ADD 12/00 and placed on Concerta. After she was diagnosed with E in Sept. she decided that right now she didn't want to go with an IEP. That we had fought long and hard, she had learned to "deal" on her own. She spoke to each of her teachers and counsolor. She went from D's and F's in the 6th grade to A's and B's and started her freshman year in one college level course in American Government. She plans to study law and help give a voice to the children and parents who struggle with "The System" every day.

Jake is in the Early Childhood Intervention Program and will probably go into school with an IEP. But that's still a ways in the future - he's just 22 months. He's been seizing since he was 10 mths, for sure, but I think it started at 7 mths.

Something you might want to check into is Sensory Intergration Dysfunction. Jake's been diagnosed and when I got to reading about it, I'm sure Jenny's right there with him. A good book to pick up on it is "The Out-of-Sync Child". SI often looks like AD/HD and a whole list of other issues children face. Here's a quick reference but the book has great detail...
[url="http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm"]http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm[/url]

Let us know how it went!

Love and light,

Lisa and kids

momof3mjt · 10-27-2003, 09:21 PM

Hi Reesemom....I wanted SO BAD to get back to you last night..but the site was messed up or something.

I hope all went well with your meeting. Did you read my thread about School districts and learning disabilities? I wanted to let you know to NOT sign anything the day of the meeting. You have a certain amount of time before you have to turn those in signed. And if there is anything you don't agree with, don't sign that page. I know this is probably too late...but I learned the hard way too!!

Another thing, if they decide to do any testing, which you can request, and they are REQUIRED to do....ask to have a report of all of the testing BEFORE the next meeting. That way you can go in with some knowledge behind you. I do know EXACTLY how you feel, I HATED my first IEP...I came out feeling like I had just been beaten mentally! Now I ask for all copies of reports to be handed to me ONE WEEK before a meeting, and I NEVER sign that day.

I take the papers to her teacher, (confidentially) and we go over them again, then I have a friend of mine look them over (because she has been through all of this) and knows so much! Then my hubby and I talk it over....

Anyway, let us know how it went!! And just so you know, you can ask for ANYTHING you think he needs.

My dd gets resource out of the room, 2x a week, Resource Aide in the room 5x a week, for 30 minutes. Speech 2x a week. The resource aide comes in to help during math which is such a hard thing for Tiffani.

Take care!
Lindy

kayakmom · 10-28-2003, 03:53 PM

I hope the meeting for an IEP went ok for you. My son was 8 at his diagnosis and was seizing a few years before we realized. He had them in is sleep also.

Hope the medication helps him and that the school starts to understand. Depending where you are the Epilepsy foundation can send out a HOPE mentor to the school to teach them about seizures and how to recognize them....