5 yr.old with epilepsy

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Haileysmom
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 8/21/2006 4:29 PM (GMT -7)   
My 5 yr.old has had 5 grand mal seizures in 3 years. she is developmentally delayed and now her Dr. thinks she is having petit mal seizures due to her delay and staring. Last week her EEG was abnormal on 3 parts of her brain. They want to start her on Depakote but I am so afraid of the side effects. I would love any info on children taking Depakote.
Thank you!

Haileysmom
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 8/22/2006 3:22 PM (GMT -7)   
Can anybody tell me how if feels to have a petit mal seizure so I can understand what my little girl is going through? She has probably been having them since she was about 7months old and is now 5 yrs. We are sending her to preschool again this year and she will receive speech therapy, but she wants to go to kindergarten with her friends so bad and is angry with me over this.
Thanks for listening.

Rogue
Regular Member


Date Joined Aug 2006
Total Posts : 65
   Posted 8/24/2006 9:40 AM (GMT -7)   
I started having petit mals at age 11. I didn't know what they were until I was in college. They're more annoying than anything, not painful. Everybody feels a little different when they have them, so I'm not sure anyone could give you an answer of what they feel like and have it match what your little girl is going through. The most we can do is tell you what our's are like, and hopefully something will ring a bell.
How you feel before one is called an 'aura', and like I said everyone's different. Body temp can change, and it affects your senses, so you can smell weird things, hear ringing or have things go silent, have problems with your vision (things have a red hue, or go blurry out of focus), and a number of other things, most very mild, but annoying nonetheless. Most common with mine are heart racing, getting really hot, and not being able to concentrate. Sometimes they'll happen a lot in one day, and people think there's something mentally wrong b/c I don't respond the right way to their questions or comments b/c my head kind of goes blank for a few seconds, and I miss an important part of what they're saying. That's where it's really annoying.
I have quite a few friends who take depakote for either seizures or bipolar, and it works really well for them. I tried it myself, but had a hard time with it, as far as it messing with my stomache. But that's a common problem for me. It's a really good one to try. I'd talk to your doc about side effects too. I can only imagine how scary it is to watch your daughter go through this, but it sounds like you're an incredible mom. Hang in there.
~Heidi Hope~
 
 
"For I know the plans I have for you", says the Lord.  "Plans to prosper you and not to harm you.  Plans to give you Hope & a Future."
Jeremiah 29:11


swedish fish282
New Member


Date Joined Aug 2006
Total Posts : 13
   Posted 8/24/2006 9:56 AM (GMT -7)   
I HAVE PETIT MAL SEIZURES!!!!!!!

this is what happens when i have them.
i dont know when i am going into one... or when i am having one. the only way i know is after words.
i can recall what has happened.
- i cant hear see or feel anything.
people try to wake me up from one... but it just doesnt work, sadly to say.
it doesnt really feel like anything... it was weird at first, because when i got them (which was in 3rd grade). i was like "WOAH i am the only one with seizures in my class and i have no clue what is happening to me". but as time went by, i understood more....

i hope i helped

kt:-)

Haileysmom
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 8/24/2006 7:18 PM (GMT -7)   
Thank you for your replies! I can understand this all better now. It is starting to make sense. I have been trying to get her help for 2 years now. She was in preschool for 2 years ..they kept telling me she was slow or LD. But at home she was so different and I knew she was smart. But some times she looked kind of stoned and sleepy. She acted like she was ignoring us and her teachers, and would get in trouble for "not listening". We had her tested at the public school and they thought she was slow and suggested early childhood (special ED). I knew she was intelligent, she knew everything on the list of things you need to know to start kindergarten , so I didn't understand. One visit to the Catholic school and the principle said to us "she is having petit mal seizures". we took her to the neurologist at our children's hospital and they did an EEG and it was all abnormal(awake and asleep) she was having hundreds of seizures a day. The doctor told me she was losing half her day everyday due to the seizures.
She has been on depakote for only 2 days and I can already see a difference!!!! I think that every teacher should be educated on spotting this. I wonder how long she would have had to suffer if i would have listened to the public school and just treated her like she was retarded. It makes me wonder how many of the kids in special education classes are really having seizures?

swedish fish282
New Member


Date Joined Aug 2006
Total Posts : 13
   Posted 8/25/2006 6:31 PM (GMT -7)   
Yeah... when i do a petit mal seizure i also looked stoned and sleepy and people do think i am ignoring them if i dont tell them about. haha. but hey, its life you gotta deal with it. you know? and i totally agree with you that teachers should be educated on epilepsy. many people in this world heard about epilepsy but they dont fully know about it.
I just finished shooting a video about epilepsy that is going to be shown around school and around the U.S. The video is to show people that kids/teens/adults with epilepsy are just the same as everyone else and can do just as much. we feel the same and love the same way. people may stereotype us and may look at us like we are retarted but that is them. it is affecting to us, but we have to understand that, that we are strong in everyway and we cant let those people get to us. it is hard.
as your daughter gets older, let her know, she is just the same as everyone else and everything is going to be okay.
i was diagnosed when i was in 3rd grade and when i was that young i felt differant and was afraid.

i hope everything goes well with you and your daughter.

i will be praying for you,

xo kt

swedish fish282
New Member


Date Joined Aug 2006
Total Posts : 13
   Posted 8/25/2006 6:35 PM (GMT -7)   
oh i am 16 by the way:-)

Haileysmom
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 8/27/2006 5:32 PM (GMT -7)   
Thanks for your prayers!
When will your video be available to schools? I think that is a great idea!! It was so sad for us to watch the other moms and kids make playdates after school and nobody ever wanted to have a play date with Hailey. I cried many days over this. I don't know of any other kids in our town that even have epilesy...wish there was a group for us.
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