absence and photosensitive seizures - Epilepsy Message Board

Peddy's Nanner · 10-21-2003, 06:56 PM

PEDDY (8YR.) HAD HIS FIRST APPOINTMENT WITH HIS NEW PEDIATRIC NEURO..... DIAGNOSED WITH ABSENCE-PETIT
MAL, PHOTOSENSITIVE "E." DR. PRESCRIPED DEPAKOTE ER 250MG TWICE DAILY. PEDDY WILL STILL TAKE THE CONCERTA FOR THE ADHD AS BEFORE. THE DILANTIN AND PHENOBARBITAL WERE NOT HELPING WITH THE SEIZURES SO DR DISCONTINUED USAGE.

THE MORNING STARTED OUT REALLY BAD. PEDDY BEGAN TO HAVE SEIZURES AS SOON AS HE WOKE UP. IT WAS AN HOUR TRIP TO THE DR OFFICE AND HE WAS HAVING ONE AFTER ANOTHER. THIS WAS THE FIRST TIME I SAW HIS EYES ROLL BACK. I HAD TO ALSO CARRY HIM IN. HE WAS PALE AND FELT AS THOUGH HE WAS PASSING OUT.HIS LIPS WERE SHAPING AND WAS NOT ABLE TO TALK AND WHEN HE DID IT WAS ONLY A WHISPER. THE SZ GOT BETTER BEFORE THE DR. SAW US. WE WENT THROUGH THE Q AND A. FAMILY HISTORY.
PEDDY WAS THAN READY FOR HIS PHYSICAL AND ALL WAS OK UNTIL DR MADE HIM HYPERVENTILATE. HE BEGAN TO SEIZE
ONE AFTER ANOTHER. MY HEART WAS TORN APART WATCHING HE STRUGGLE.
THE DR ALSO FAXED A REPORT TO SCHOOL, SO THEY WOULD BE AWARE OF HIS "e," SHE ALSO REQUESTED A 504 ( WHAT IS THIS?) IT IS SUPPOSE TO HELP HIM KEEP UP IN THE CLASSROOM WITHOUT PUSHING HIM TO THE LIMIT OF A SEIZURE (STRESS BRINGS ON THE HYPER-VENTILATION)
WE ARE VERY HOPEFUL THAT THIS MEDICIATION WILL HELP.
ANY FEEDBACK OF SIMULAR CASES WOULD BE APPRECIATED.
THANKS FOR ALL THE PRAYERS AND SUPPORT OUR FAMILY HAS RECEIVED FROM THIS SITE..
PEDDY'S NANNER

gypsy · 10-21-2003, 07:26 PM

Hi Nanner:

I thought about you guys all day. Sorry to hear it was so stressful. It was good though that he seized at the Doctor so they could see it first hand. Hopefully, the meds will help and certainly stay on top of the teachers. I've found that some of my notes and concerns at school didn't make it to the powers that be (just a lot of lip service) so be sure that they know what is going on.
Good luck to you and your family is certainly blessed to have such a caring, supportive lady for a Nanner.

Peddy's Nanner · 10-21-2003, 07:40 PM

THANKS GYPSY,
IT'S GREAT TO KNOW THEIR ARE PEOPLE OUT THERE THAT REALLY CARE. GOD BLESS AND BE SAFE.
NANNER

timbercat · 10-22-2003, 02:39 AM

Funny you should mention a 504 plan. I just found out last week what this was, as my daughter is having some memory problems from switching medications. A 504 is a plan that will allow the teachers to give a child some extra help with class notes, using notes on tests, taking tests in another room away from the other kids, allowing extra time for test taking, etc. Each plan is taylored to fit the needs of the child. My daughter is in high school so we are working with 8 different teachers. After reading all the problems that people have had with schools not helping their kids, I was prepared to do battle. But was amazed instead, Meg had talked to her biology teacher Friday about getting some tutoring to catch up, her teacher called me then she talked to guidance counselor and got the 504 going. Guess we are kinda lucky the teachers are more than willing to help.
God Bless,
Terri

robinrobin · 10-22-2003, 10:37 AM

since I am not in school I dont know about the 504 plan but I am glad that it is out there to help. I have grandmal seizures. and absent seizures and photo light sensitive. I am on depakote and depakote really helps me keep my seizures down. I have a hard time talking or putting words together when i have seizures. it must be so hard watching your grandson go thru this. best of wishes. i hope depakote really works. it made me very tired in the beginning but then my body got used to it. (((((((((())))))))