As we wait for our MRA, I thought I'd check in with some of you about a couple of my daughter's symptoms to see if they are shared by any of you.

She drinks a lot of water during the day and night...always seems thirsty.  In additon, she overheats very easily and cannot be outside in the summer heat, or even inside without air conditioning, for long.

Does this have anything to do with moya moya?

Thanks,

Sharon

 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

Mary Grace,

If your daughter is having trouble at school because of the heat, you should make sure that air conditioning is added to her IEP.  The school would then have to air condition any rooms she uses.  My daughter has air conditioning in her IEP.

Sharon

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...).  [smiley=twocents.gif]

-Shari

 Sharon,I've been thinking about adding that to her IEP for next year.I'm wasn't sure how to get that started.You know how they "balk" at anything that costs them more money.Also they will have to move it each year to another classroom.How did you get it into her IEP?Sometimes it just takes the "right" words.Every eyar i've just hoped that maybe it would be a cool spring and fall but you jsut can't predict it.We had a very warm fall this year and it really seemed to affect her day.Thanks for the advice.
Mary Grace

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

hi....with Cara having more TIA's...less on cooler days but warmer days it strikes.   Arizona temps go from 40's in early mornings to high 70's in mid afternoon....find myself dressing Cara in layers but then she forgets to let go of layer or two !!!!   Thats good idea to include AC in the IEP...she isn't in a program yet but she has a team watching her (speech pathologist, psychologist, special ed teacher and her regular teacher)...we'll meet in few weeks and Im going to bring that up....as it does get HOT in az.     But yes she misses classes if we have to remove her (only in first grade though...but still).  Im hoping the cool weather remains little longer though.

:D  CarasMOM (carol)

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  ;;D

Last year we lived in Va. and we were at my sons baseball game under an umbrella that sun could not go thru and Mandy was drinking alot and she still almost passed out, she stood up and got real dizzy we had to sit her back down right away. After getting her in the AC in the car half hour later she was fine. The drinking alot ALWAYS helps to prevent problems but my point is even in extreme heat they still have a hard time(MM"RS) so we try to avoid extreme heat as much as humanly possible. Thats why I'm a little worried about Fl. but I guess we can be in the sun as little as we want, can't wait to go. We're still going regardless, we'll manage I'm sure.
                        Nancy  8)

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

HI:

I had the same experience as Christy.  I was always thirsty and hated heat long before I knew I had MM.  I once went to visit my cousin in Austin and we went for a picnic in the middle of a hot May.  I was the most irritable person until the sun went down, and my cousin said to me that I went from one extreme personality to another.  :)   I always found it odd that I would have such an adverse reaction to heat.  

Now my irritability is a lot less since I know what to do (DRINK DRINK DRINK WATER WATER WATER) and I know why it's happening.  ;)

Trina