I am Alex's mom (Mrs. Hunkers class). We were wondering about thyroid issues for Alex. He is on steroids and has had so many side effects from them. He has gained a lot of weight on the steroids and we really try to keep him on a low fat diet but still gained weight. He has a really hard time getting to sleep at night. we were thinking maybe to check his thyroid. is there a link between low thyroid and steroids/dmd?
Stefanie Killian said:
Have you checked his thyroid levels? My son had borderline thyroid issues and was put on medication. His body was working so hard to compensate for the thyroid he could not go to sleep at night. He has been on it for about a year and a half now. At his last visit, they upped the dose again. He had begun to have trouble getting to sleep again and and his levels had changed so his medication needed to be readjusted. When he has trouble sleeping we give him boundaries instead of trying to get him to sleep. He must stay in his bed quietly. He can read books or have a stuffed animal. He is 7 now, but when he was younger he was allowed to play with specific toys or have books, but he had to stay in his bed. Sam also ramps up his activity level when he is over tired. I have him lay in his bed with his eyes closed and pretend that warm water is being poured on his body. I move my hands down his body gently to help him relax. I am trying to teach all of my kids this relaxation technique. If nothing else, it usually interrupts his activity and helps him slow down.
All 4 of my kids have had trouble sleeping at one time or another. It seems to come and go. Hopefully this is just one of those phases that will be short lived. Sleep is kind of a balance thing. If he is sleeping too much during the day you may need to limit how long he sleeps so he will get to sleep quicker or sleep longer at night. My kids all had sleep balance issues at about 3. You just have to figure out how to keep his lack of sleeping from disrupting the rest of the family! Easier said than done sometimes - good luck!
When I just read your post it sounds just like my 3 year old! Did you have his thyriod rechecked or what happened over the last few years?
We have been told from our specialist that it is common for kids with Duchennes to have abnormal sleeping habits and that medications are sometimes required to help alleviate the problems that it causes - more for the rest of the family than the one affected!!
I remember with our son that he stopped having day sleeps after he was 1, and he would get overtired yet still keep on going. It was almost like he never wanted to miss out on anything. Even when he was asleep he would still wake up through the night, but we were lucky enough to be able to get him back to sleep. We dont have him on anything to help him sleep, but he now sleeps with us, and has done for quite a few years now. We tried to make him sleep in his own room, but it never worked as he would always wake up and want someone to sleep with him. At least this way when he wakes up in the night he can sense one of us nearby and keeps on sleeping. If neither of us are there then he will get up and look for us! Still it allows us all to get a decent nights sleep, and as we keep telling oursleves, there will come a point when he doesnt want to sleep with us anymore and he will move to his own room then.
Connor has been a bad sleeper too. He gave up naps the same time as my older son by 2 years. He would also fight off sleep even though he was tired and if we pushed the nap, he wouldn't go to sleep until 3 or 4 and we'd have to wake him for dinner. In turn he wouldn't fall asleep until very late. We talked to his Pedi and just started him on Melatonin which is certainly helping. Only on days he's exhausted (from an active day like going to the beach) did he fall asleep before 8. We are still waiting on getting his thyroid checked but thank you everyone for the replies!