Down syndrome and Temperature Regulation

Where we live, parades are a big thing. It seems like there's a parade for every holiday, even a freezing cold light parade in the winter. Summer parades are a favorite and always packed with people. During Cooper's second year, I took him to a local parade on the 4th of July. Daddy and sister were in the parade, so me and Coop sat on the side of the road with some friends.

I kept Cooper inside a lot of his first year, afraid it was too cold or too hot for him after reading a little about temperature regulation in people with Down syndrome. Some people with Down syndrome can't keep themselves cool or warm like a person without Down syndrome can. According to Advocate Medical Group, "In our experience, some (or many) people with Down syndrome sweat less than others."And, "We do see more acrocyanosis (blue discoloration of the hands and/or feet in response to cold) in people with Down syndrome." [https://adscresources.advocatehealth.com/temperature-regulation-in-people-with-down-syndrome/]

So, we really hadn't done too much outdoors. This was Cooper's first parade! By the time the parade started around 10:30am, the sun was beating down and it was sweltering. I tried fanning Cooper with a flyer I'd gotten from one of the floats. He looked absolutely miserable, and I noticed it didn't look like he was sweating, just turning a very red color. I tried getting him to drink water, but he refused. Our friends let us borrow an umbrella to create some shade, thankfully, but even with the shade I could see Cooper was already overheated.

As soon as we saw Dad and sister in the parade, I hurried to the truck and turned the AC on full blast. Cooper's face started to turn less red and he slowly started to smile again. I got him to drink a little. He perked up, and then I noticed he hadn't sweat even a drop, while I, on the other hand, was drenched in sweat. As I turned to my online community to share about Cooper's lack of sweat, many parents told me it was similar for their child with Down syndrome. Some said their child appeared to grow out of it and eventually did sweat more. Others said their child sweat a ton from the get go.

I learned I needed to prepare better for heat with Cooper. Umbrellas or tree shade is a must. Fans and spray bottles are necessary to cool him off. And most importantly, pay attention to his signs that he's overheated and take action before he gets too hot.

In the winter I learned that the cold can be hard on him, too. We got ready to go outside to a walk through Christmas light display. I dressed Cooper warm everywhere- beanie, layers on his body, gloves. And then I put on his orthotics and shoes like I always do. We enjoyed our night at the giant light display, somewhere very popular and crowded. Cooper sat bundled in the stroller and I thought there's no way he would be cold. I don't believe his body ever got cold, but when we finished for the night and got to the truck I thought to check on his feet, and they were so cold! I hadn't layered them well, and frankly didn't really think of it because of the fact that he wasn't walking yet. Again I learned I needed to be more prepared and check on him regularly. Especially because he isn't able to communicate yet if there is something bothering him.

Highlighting differences my son can have because of his extra chromosome is important to me because these are things I never knew about, things I never would have thought about before knowing Cooper. If we can spread just a teeny bit of awareness either for a family with a new diagnosis or just someone who hasn't been around Down syndrome, then it's worth it to me.

During the parade. I'm trying to get him to smile, but he's clearly not doing well.

After the parade in the AC. There's his smile!

Bundled for Christmas lights.