Children and Epilepsy?

[tiggerlover]

Our neighbors 5 month old daughter was just diagnosed and I realize I know relitively nothing about it. I do know that it is associated with seizures, but nothing beyond that. Just wondering if anyone knows anything about children with epilepsy?

 

[Kitty 34]

A teacher/friend of mine's DS was just diagnosed this Fall with it. He's 6 yrs old. They are still trying to regulate the drug he has to take in order for his seizures to calm down. They're told once that happens, their son will be a lot better.

 

[Mamu]

Last October my Granddaughter Lucy had a Grand Mal Seizure while at school. She has not had any more seizures since the one, but needs check-up every 6 months.

While there is still some slight activity going on, she has not had to take any medication.

Epilepsy

 

[fklhou]

A very nice young man in a scout troop that my son used to be ni has epilepsy. He used to have three to four grand mal episodes a week but the concition is under control with medication. I was preally proud to attend his eagle court a couple of years ago.

 

[poohbears5]

My 8yr ds startied taking seizures at age 3yrs the meds are tough we went through alot of them before we found which one worked the best for him .

 

[Dream]

Being a child...and adult...who has this disorder, I guess you could say I'm "pro"! Medication is the treatment of choice although there is now some experimental surgery used in the toughest to control cases. It takes awhile to get the right "mix" of medication but once this is achieved the control of the seizures achieved by the meds usually allows a fairly normal life. There are ranges of course....from no seizures at all to an occassional breakthrough seizure now and then.
Please pm me if you have any more questions. This is a tough disorder for a child...teen...adult....simply because of the unpredicability of the disorder and the misunderstanding in the general public. Your friend should strive to avoid "overprotecting" this child. My parents were MASTERS at this. Looking back I don't know how they did it. I was NEVER told there was anything I couldn't do....so I grew up very empowered and looked at epilepsy as just a hurdle in life. What a gift.
Good luck to your friend and this child. If they would like to talk to somebody who has "been there" I would be happy to send you my email address.

 

[LuvN~Travel]

I think a lot of responses would have to based on what kind of epilepsy and what caused/causes it. My daughter is considered 'seizure prone' ( we don't use the epilepsy label too much due to this), but hers are considered to be the cause of her operations and such over the years. She has hydrocephalus on top of her birth defects, and they figure the seizures started because of all of her neurosurgical/craniofacial problems with her hydrocepalus. Complicated, huh? However, until this year, most of her seizures were related to either head bumps, surgeries, and stress after surgeries. But, this year she's had about four major ones, and we can only figure (after testing everything) that it may just be teenage hormones kicking in. Unfortunately for her in November, she had a lot of congestion during one, and aspirated some of it during a seizure and caused pneumonia leaving her in the hospital for a week. (and now she may have scar tissue in her trachea because of the intubation that day).
I also have a coworker who has it and hers was caused by running headon into a glass door as a child.
I would personally recommend joining a listserv support group as soon as possible. Support groups can be a real great support during this time for you. We're part of one for our daughter's problems, and have learned so much, as well as sharing so much.
Good luck.

Kim
P.S. Tell your friend that Carbatrol will cause major weight gain, though! Yuck. Our daughter has put on so much weight because of it. Luckily we've finally gotten her off of it.