My daughter was diagnosed 4 yrs ago.She's 8 yrs old now.
she has a very difficult time with the heat.I've never been sure whether it's from the storkes she suffered or the MM.Even in the winter if the room is a little too warm.She just shuts right down and can't funtion or concentrate.This makes it difficult at school in the spring and fall when the weather is warm the room are "beastly".Summer is difficult because she won't go outside until the sun goes down.I can sometimes coax her into it for a little while or she's OK if we're swimming.I've also started to notice that it doesn't seem like sweats.Since it's a precaution we've always been told to follow we make sure she drinks a lot.I'm not sure if she would do this on her own.
Mary Grace

Sharon -

One of the things that is so important with MM, which most surgeons say post-surgery, is to make sure you stay hydrated.  When I first started experiencing symptoms I was also drinking a lot of water too.  I was very stressed at work and thought I was dehydrated...anyway, yes, hydration is important.  As for the heat - the thirst and the heat issue are most likely related....she probably gets more thirsty in the heat.  Just my opinion (of course, I'm not a doctor...). 

-Shari

Hi Mary Grace,

Her neurologist wrote a note and it was put in the IEP.  But...we had had a lot of incidents where Rachel got so hot that she had to be taken from the classroom and sent to a cool place, so she would have been missing huge chunks of school if this wasn't in place.  (She is in middle school now, so she has to change classes often, and every class has to have a/c.)  Regardless, I'm not really sure they could argue with a note of medical necessity.  Certainly if your child is at any health risk whatsoever, they should be concerned about it from a liability standpoint!  (I do know about all of the misery that goes along with getting services though...but since this is health related it may be easier for you.)

Of course, places like the gym and cafeteria can't be air-conditioned, but they are usually big and a bit draftier, and if she has to leave them it's no big deal. 

Good luck!

Sharon

Another thing...just a precaution I might as well share...sounds like your daughter's extreme thirst may be something else...unless it has already been ruled out.  Cara doesn't drink that much...but I (don't have MM) had a bout of extreme thirst...nothing would satisfy my thirst...turned out my blood sugar was TOO high and I was a diabetic.    Long time ago my sister had extreme thirst...turned out she had luekemia.  Not to alarm you but I wished a friend of mine told me I might have diabetes as she had it and she didn't even think about it...once controlled ...the thirst is controlled.   Just keep that in mind.  Otherwise just stay hydrated....on all of Cara's field trip forms...I put "be sure she has access to drinks/fluids to stay hydrated"....she's going to the zoo...I may end up going with her just in case  ;

I have always had a problem with heat before i even knew that i had MM. Many times i would get dizzy and feel that i was going to pass out so i try to drink alot of water and do not over do it in the sun. I am sure that some people are more sensitive to the sun and heat than others but everyone should stay hydrated. I am really bad about drinking water but try much harder since diagnosed with MM.

Christy