It's Summer and very hot and humid here. Jack's geneticist and pediatrician both want Jack to get as much exercise and outdoor play as any other 3 year old. I have other children who want to be out, even in the heat, and I love being outside too, so- great.
The problem is that Jack just doesn't handle the heat like everyone else. My other kids will play, with just a bit of water every now and then, till the sun goes down. Jack just wilts. Picture a limp head of lettuce, only this lettuce cries and throws tantrums all while being limp. Not fun.
Before we knew that Jack had a genetic metabolic disorder I had noticed his trouble playing at the park. I saw it as a discipline issue and tried to work with him to not hang-out on my lap. Sometimes he did great when the temp. and humidity were low, but I had not figured out the pattern. Even more confusing were the evenings when he would cry and tell me his legs hurt.
The problem is that Jack just doesn't handle the heat like everyone else. My other kids will play, with just a bit of water every now and then, till the sun goes down. Jack just wilts. Picture a limp head of lettuce, only this lettuce cries and throws tantrums all while being limp. Not fun.
Before we knew that Jack had a genetic metabolic disorder I had noticed his trouble playing at the park. I saw it as a discipline issue and tried to work with him to not hang-out on my lap. Sometimes he did great when the temp. and humidity were low, but I had not figured out the pattern. Even more confusing were the evenings when he would cry and tell me his legs hurt.
Now we have a pretty good regimen of aggressive hydration and carbohydrate pushing that we call- get ready for a technical name- "Go Go Juice". In other words if you want to get to "go" you have to drink the juice. When playing outside Jack has to drink 8 oz of gatorade with 1 to 2 tablespoons of cornstarch mixed per hour of playing. I've found it works best if he has his first dose on the way to the park, rather than after he's played for a while.
Even so he still has problems with excessive sweating, leg cramps, bloated belly, exhaustion, and hypoglycemia after outdoor play. Any of which usually hit their peak a few hours later or the next day. I've been experimenting with trying to feed him easy to digest foods after he's had especially tiring days, but that's still a work in progress. I hope when he sees the G.I. doc about possible gut dysmotility that she will have some answers.
Now to the interesting part…
I'm a member of a tremendous Gmail group that's linked to The Fod Family Support Group. One member recently shared info about Cooling Vests. It is based on the principles of evaporative cooling. I can't believe that I've never heard of it before: Heat Intolerance & Mitochondrial Disease | MitoAction No idea if it will help but I'm extremely excited about trying it. I'm also perplexed that something so relatively inexpensive and non-invasive wasn't already recommended for Jack.
We'll see.
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1 comment:
Susan, I am very impressed. You have a way with words, but I already knew that. Can't wait to see the vest. And I do have to wonder if the doctor doesn't know about this or if his opinion is that it doesn't work, or if he just.....uh, forgot? Kinda like forgetting to tell someone that they could try wearing thick socks when skating to avoid blisters. My guess is he doesn't know. Anyways, I like your blog. See ya tomorrow.
Angie
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