There are a number of reasons Max has trouble staying cool, it is common in people with metabolic disorders to have a hard time regulating their temperatures. Also, his brain is not wired quite like it should be, and that can play a role in it too. So those two reasons, and an immobile child lead to some very hot Summers for him. And Spring, and Fall, and Winter too.
We try to keep our house at around 64 degrees in the Winter. Max is happy to sleep without covers on year round. In the Summer, it's difficult to keep the house cool enough for him. Already, in May we're having to turn the air conditioner on to keep him from getting too hot.
A too hot Max, can lead to a seizure having, sweating too much to make his metabolic levels get wonky, dehydrated Max. And that's not fun for anybody.
In an effort to keep Max cool, without giving the rest of the house hypothermia, I've searched out cooling devices for him. Last year we got a portable swamp cooler to run near him when the weather gets into the high 90's or 100's. (And yes, it does get that hot in Colorado...for a couple of weeks at least.) We have black out curtains in the main levels rooms, and keep them all drawn during the day.
We got Max a cooling vest, which seems to help if there is a breeze to actually cool him. If there isn't, it just turns into a warm wet vest, quickly.
We are weighing our options right now, on using money in his trust to pay to get the air conditioner fixed in his van, or to pay for another year of music therapy. If this early Spring has been any indicator, we should fix the air conditioner, or plan on spending all of our time indoors this Summer.
These past couple of weeks it's been getting hotter every day. I read on a fellow mom of a super-hero's blog about how her son used a Chilly Pad at night to sleep when it was hot. Her sons have a similar metabolic disorder to Max's, and getting hot is serious business to them too. I looked into this "frog cloth" to see if it was something that might work for Max, since it seems to work for them.
I ordered the Frogg Togg Chilly Pad in bright YELLOW from Amazon.com last week, and it got here on Saturday. Saturday was 60 and raining, so we didn't need to use it. But today, we were back in the high 80's and the house had reached 80 inside by 5:00pm.
I opened up the package and rinsed with warm water like instructed on the packaging. I wrung out the excess water, and then draped it over my arm to see what it did. It did not feel wet, just cool. It wasn't terribly heavy, which I expected it to be filled with water. And then...it turned COLD! I made Steve and Abbey feel the magic before we put it on Max.
At first, we put it behind his back on his chair to see if it would keep his back cool. That's where he gets the hottest. I think it must have kept his back cool for a couple of minutes, but when we lifted him forward to check it, I could tell it was already warm to the touch, and probably not that comfortable. Then, I put it around his torso so the air could still touch it, and continue to cool him. This seemed to be a better solution for him. I think then he's in his wheelchair, we could drape it around his shoulder like a scarf, or around his legs or on top of his head. We're not going for good looks when we're trying to stay cool.
In the end, he liked hugging it, and laying on it draped over his pillow. I think the key is making sure air can touch it, so it stays cool. It won't work if he's got his back up against it. It stayed cool for about 4 hours without needing more water.
(It's folded in half length wise, and still covers his whole torso.)
And here's a little video of him telling me he likes it, and to not take it away from him.
If you're looking for something to help as the heat turns up, order one of these. I'm not being paid for my advertisement of this product, nor does Frogg Togg know who we are. It's just a good product, and I wanted to pass it along, since I know this is a problem with so many people who have trouble regulating body temperatures like Max.