Congenital Myasthenic Syndrome and the heat...

Hi, Happy Tuesday. Water hose babybelow. Luke's summer fun on the porch. It's so hot here....it's our only choice as Luke gets very lethargic during the heat.

I wanted to say something about 'heat' when dealing with CMS kids. In our case, with Luke's low muscle tone, we find that he gets really lethargic when exposed to high heat for a long period of time. To the point where he just sits there and can't move much. Even with the Mestinon medication.

I have seen on my special needs forum that this is very common with hypotonic children in general. So, I suppose it's because their muscles are already working so hard on a good day that when heat is involved..it exhausts them? Just not sure.

At any rate...

We keep him very cool! Video below is fun. He gets me in the end. You'll see! Hugs, A