reoccurant low grade fever is it common w/ mito/ga2?

[Guest guest]

Have you had him outside in the warm weather lately? If so, alot of these kids are unable to control there body temperature, autonomic dysfunction thing. We are unable to take Grace out for any extended period of time if it is over 75 F. If we do keep her outside, she gets very hot and sickly. Once we bring her in, she will usually have a fever for the rest of the day. Just a suggestion. Best wishes.

[Guest guest]

,

Has it been warm where you live? It could just be his body dealing

with the heat. cannot cool down her body (we keep the air on

all spring, summer and early fall). Never above 76 in my home! That

might be a thought. This dysautonomia is a bear. Last summer I had

low grade temps off and on too. Once summer was gone, so were they!

Dawn

[Guest guest]

yes I would get a protocol written into the IEP and a plan with the school nurse too. I would also request a AC class room if they don't have one. They can also send a bus just for your son so he's not on it too long. We have that for Gaige...helps with stemming and such.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.http://www.heartliftersgallery.com/http://www.lifeofloveproject.org/

[Guest guest]

try www.sarahmoodyfoundation.org They are an orginization that will get you a cooling vest at no cost to you. All they need is a letter from your doctor, stating how the child will benefit. Once you email them, though, they will give you more info. Gracie is actually on the waiting list now for one, we hope to get it before summer is over. We are actually trying to raise money to help pay for hers, she will get it very fast if we can raise all the money. This is a really great charity, and they really make it very easy to get one. I found out about them from another mother in the group who has a child that recieved a vest from them. We found out that our insurace won't pay for cooling vests, because they are considered clothing. (Like you can go pick one up at the Gap or something.) Best wishes.