problem with heat or cold,seizure activity,even with a good med blood level???

Tammy - posted on 08/05/2009 ( 7 moms have responded )

59

21

9

Does anyone elses child do this??? If my daughter gets to hot or to cold she will drop like a stone.It's almost a faint, but she will even say I am having a seizure.We will either get her cooled off or get her warm and that seems to stop what ever is happening to her.Jessica is 20 years old, and she still does this.The Nero doesn't seem concerned at all by this, but it makes it hard like if we go to six flags or she stays at camp in the summer.This past year we had snow and for SC that's rare, she wasn't out in the snow for 10 mins and I saw her going down. I took her inside got her warm and she was fine.I don't even really know if it's a seizure she is having, twice at special olympics she did this,people have to watch her so close.I worry what if no one was around and she didn't get cooled off or warmed up just what would happen, would she have another stroke??

any feedback would be very much wanted !!!!! thanks !!!!

MOST HELPFUL POSTS

NIcole - posted on 08/05/2009

5

8

1

I don't have a child with Epilepsy but I am a adult with it who does the same thing. If I take to hot of a shower or bath I can go into a seizure and that is not fun. I live in Louisiana and I can't stay outside long because I can't handle the heat but here is what I have found. If I go out I keep a towel that I can wet and put n my neck. That helps a lot. Also the endurolytes can be helpful and if that doesn't work try keeping some rock salt on you. I know it sounds crazy but in the abscence of enurolytes this helps bring a balance to the body. It has helped me tremendously. I can't offer any suggestion for he cold that really doesn't happen hear. Usually it is a shift in my body's electrolytes that causes the problem or I sweat out to much medication or something like that. I hope this helps. As a Mom who goes through this and a adult I hope this can help.

Leslie - posted on 08/05/2009

10

42

1

I just got from NYU with ny daughter (13) who has epilepsy. She has many seizure triggers. One being hot water and the other becoming overheated (I also live in SC). The doctor, who is a marathon runner suggested Endurolytes by Hammer Nutrition. You can get them online or at a biking/ running store. I haven't started her on them yet, so can not give any feedback. She is doing better now that we have switched meds. She actually played kickball for over an hour and a half and jumped on the tramp. for 30 minutes. :O) Usually, she has a seizure after 10 min. Good luck!

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

7 Comments

View replies by

Lori - posted on 08/07/2009

1

19

0

i wish i could help u but i am seizure disorder as well ever since i was a baby and today i'm 42 yr's old and i'm still having constanly my levels are high and my meds make me see double vision

Tammy - posted on 08/06/2009

59

21

9

Carla , they called my daughter's seizures, febril seizures right up until she had her stroke(did not have to do with hot or cold,she had chicken pox) then after she had the stroke that's when they decide well maybe we should look into these seizures deeper.and when jessica was small she had the kind of seizures that never stop until a doctor or hospital stops them , and they still called them febril.but that was 18 or so years ago.I think ER's know more and reg docs know more on the subject.After the stroke is when they started talking about statis epilipsy, and giving me more tech terms .Because it was a whole new ball game LOL!

sorry went on a rant about doctors !!! but a friend of mine's daughter had only 4 seizures in her whole 23 years to date. and all 4 was at the pool, either she got to much sun or got to cold in the water.she was between 14 and 16 then she never had another one.the docs still don't know why she had them and her parent were from france they even had her looked at there,no one knows why...weird huh??

Carla - posted on 08/06/2009

6

0

1

Twice my daughter has had a seizure after coming out of the pool. She cant control her body temp at all and shivers like dixie as soon as she gets in one.

Both times she had a roaring fever by the time she had a seizure so the neuro wont say if its febrile or maybe the light dappling off the pool...personally I am sure it has to do with her being too cold.

Tammy - posted on 08/05/2009

59

21

9

I will look that up(endurolytes) and thank you for that!!! Your daughter is so pretty!!!

Yep we play soocer with a local church group and softball, they go about an hour pratice , that's about all the kids can do! the ones with CP or other problems tend to also be affected by heat! I will share this with them too !! Thanks!

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms