Epilepsy Foundation

Hi all!

Things have really calmed down for my son, as far as his seizures. He may had had one Monday at school, but other than that, he hasn't had one on over a month! We are so thankful, and I hope we continue on this path with less seizures. Thanks for have ansered all my questions, and I'm thinking ahead about what to expect as the weather gets warmer.

This week it has gotten hotter here and I am a bit worried about the hotter weather bothering him. This week alone he has been in the school nurse 4 times (2 times today). It seems as he gets a cool drink, and a little relaxing helps and he is able to go back to class.  I am hoping to keep him in school as much possible...he missed so many days this yr w/ seizures. I guess I'm wondering what has helped your children as the hotter weather hits. I'm thinking of sending him w/ a water bottle tomarrow so he will keep hydrated. Any other tips would be great...thanks!

Oh, he did just have a small increse on his dekapote so it's hard to tell if it's the increse or the hotter weather or a virus..but I thought I'd as you all.

 

-Always hoping and praying for ALL of our kids! Hugs.

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Replies to This Discussion

Jimmy reacts to small rises in his temp. His basal is 97.4 so 98.6 is a mild fever/reaction. I dress him in layers that he can peel off and he gets a water bottle in school. Let his teacher know that if he feels cold, his body is probably too warm and needs cooled down. Jimmy's teacher let him put a jacket on and he ended up out 3 days with clusters. Ice packs on the back of his neck helped, too.

Last summer was a nightmare for us. We ended up trapping him in AC as much as possible to keep his temp under control to avoid seizures. He's on Topomax and it's awful for raising their temp. But he's been TC free 2 months, seizure free 1 month until 1 small one today.

I'm not familiar with depakote, so I don't know if the temp rising is a side effect.

You might ask his doctor about a cooling vest that he could wear in higher temps.  I know that we must avoid high temps with my daughter, as heat can drastically lower her seizure threshold.
Wow!  Hearing all of this brought up an issue that I hadn't even been aware of.  This will be our first summer since the diagnosis and I guess I hadn't even considered how the temp could effect him.  Hopefully this will be a non-issue but I will have to research a little so that I am educated if it were to happen.  Thinking about the afternoons we usually spend running around on the playground and at the pool....Hydration is obviously key and keeping ice packs in a cooler wherever we are is a must not only to keep our drinks cool but also our boy if necessary.  Still trying to adjust to our "new" normal.  Good luck to all!!!
Wow.  Yep, I didn't realize this about heat.  Although we went thru last summer w/out any TC's, my daughter's epilepsy has changed so much.  I'm not gonna dwell on it but just get as much info as possible.  Glad your son is doing better.  I know all about visits to the school nurse.  My daughter's on homebound for a while due to seizures at school and going to the nurse several times.  I did read that some people can find a way to abort their szrs by a distraction once they experience the aura.  I often wonder if that's what's been goin on w/ her.  Hope it doesn't pose much of a problem for your son.  Take care.

Ok, a small update...

 

Since our small increse, my son had every with upset stomach, dizziness and a headach. He told us the upset stomach came in waves, but would vanish half way thru the day. I think it was the increse. He missed a lot of class last week. We decided to bring him back down on his smaller dekapote dose and that seemed have helped a lot. No dizziness, no upset stomach, ect. It is only the 3rd day, but we'll see!

 

About the weather thing...I posted it to bring it up. I was told by a little birdie (aka Isquier :)) to watch for dehydration and the heat. Right after I was told about the dehydration thing is when I noticed two days that the weather really affected my son. Both days he had to come home because he felt so crummy. Seizures? I don't know but now I pay a little more attention. Thanks Isquier!

We hit a record here of 84 degrees here yesterday and even though we were outside a lot, he did just fine. I kept pushing liquids and it helped.

 

We all try to help each other out:)

Hugs.

Thanks for putting this up my 12yr. old son is in Boy Scouts and they do alot of hikes during the summer.  So I will have to keep a closer eye on him and make sure he drinks enough this summer.  There is always something new you learn with E.

Thanks alot for the info...

Does it seem like the AE's kill our kids thirst reflex? Í haven't seen a discussion but it seems like getting our kids to drink enough clear fluids is an issue.

I don't know, missi, but it's an intersting subject to address.

At birth, my son was almost 9lbs. I tried to breast feed him and as we were ready to leave the hosp., they told us he wasn't getting enough milk (I wasn't producing milk, I guess). He was dehydrated and ended up in the nicu for 3 days. After that big scare, we just realized that he just needed more milk, more fluids. He needed the 4 oz. bottle as an infant. And he has been a huge drinker and has been ever since. That has really not changed for my son. He always gulps down his drink before the meal, and will usually get refils. But each child is different, right? 

 

I'm sorry to hear about Jimmy's small seizure the other day. It seems as soon as we think we got it...sigh. I hope things calms down for everyone! My son has had a few days at school that he thinks he had seizures too, including yesterday. We just roll with the punches, right?

Another thing you said made me think, Missi. When I pick up my son from the school nurse, they ussually take his temp. It always reads low. I thought it may be the funky lazer-beam them.., but the more I thought about it, he reads a slightly low temp at home too. Something to think about, thanks!  

Holly, thanks for your comment. I have never head of a cooling jacket! I'll look into it this summer during baseball and football for sure!

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