Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, July 06, 2011

Understanding Anhidrosis

Anhidrosis (also known as hypohydrosis) is the body's inability to sweat, or to sweat efficiently enough to cool itself.

When Angela was a tiny baby, we would be in the car, her riding along just fine, when all of a sudden her color would kind of change, with her cheeks going red and her mouth white, and she's start SCREAMING inconsolably. The first time it happened, she started screaming so suddenly I thought a bee had stung her or something. I quickly stripped her of all her clothing, which is when she promptly stopped crying.

Hmmmm

There was no bee, or any other bug or visible cause for her screaming. We had no idea what had happened, but the incident repeated several times that summer, and after the first couple of episodes I knew if I just removed her shirt and shoes she'd quickly calm down and be fine again.

When she was about a year old, after a round of respiratory problems, Angela was tested for Cystic Fibrosis. This test is done by collecting sweat using a special stimulation device on the skin. After the allotted time, the tech said they weren't able to collect ANY sweat for the test. The tech didn't say, "We weren't able to collect enough sweat." No, he said,  "We weren't able to collect ANY sweat. There must be something wrong with the stimulator."

A few weeks later we repeated the test, at a different children's hospital, with the exact same results. No sweat! That's when our developmental pediatrician diagnosed Angela with anhidrosis. I didn't know at the time, with toddler Angela, just how serious Anhidrosis is.

Anhidrosis is a life threatening condition because the person can suffer heat stroke very quickly, and under what, for typical people, are tolerable temperatures. For Angela, being outside in 70* weather in direct sunlight is too much. If it's shady, or a breeze is blowing she'll be ok. Once the temps hit 80*, she has to be watched VERY close because she can go from "fine" to "dishrag and ready to collapse" in a matter of minutes. Twice over the years she has passed out. SCARY!!!

Now Angela is pretty good at being able to say, "I'm hot. I need shade!" and will move herself if she's able. Unfortunately adults around her aren't always paying attention to her visible symptoms that say she's over heating, and those symptoms are there before she says something. Over the years we've learned that she just isn't able to be involved in certain sports, like Special Olympics soccer because it's just too hot for her. This year's national DS conference is in San Antonio TX, in August,  and we didn't even contemplate going because of the heat. It's a miserable place to be for a child who cannot sweat!

We've had very few nice days so far this summer here in Minnesota. The few we've had have been too hot for Angela, including 1 day over 100*, and several in the high 90's. Over this past holiday weekend, it was really hot here. We waited until evening to go to the carnival, but still she got too hot and asked to go home. A few minutes in the car's A.C. and she was much better, but still not well enough to return to the festivities. The 4th of July parade was really rough for her, as well as for Axel who is in a hard plastic vest lined with lambs wool right now!

After the miserably hot weekend I realized it was time to order Angela a  new cooling vest. They've really changed a lot in the past few years! I spent all morning shopping for a new one, using technology that best suits Angela's needs. The one I ordered was the Stacool Vest. I ordered this one because 1) it has a zipper front, allowing Angela to get in/out of it herself. 2) It is less bulky, allowing it to be worn under clothing. 3) When full loaded with cool packs it weighs about 5 lbs.


 I can't wait for it to arrive so we can get back to living the fun summer life we Minnesotan's spend all winter looking forward to!

2 comments:

Stephanie @ Ralphcrew said...

Ya know, I've been wondering about Theo. I cannot recall him sweating at all and he has a terrible time regulating his temperature. I wonder if I should have him checked out...thanks for the information!

Marianne said...

OH, that is really scary! Hopefully that vest will do the trick!