My three tear old son Ryan has been having some serious issues with sleeping (both falling asleep and staying asleep). There has been a few days where he woke up at 1 or 2 am, and didn't go back to sleep until 9pm the next night. I have spoken to his pediatrician about the issues and he prescribed Clonodine (1/2 to 1 mg one hour before bedtime). The Clonodine works to get him to sleep, but it only lasts for about 4-5 hours and then he cannot go back to sleep. The pediatrician then recommended giving him 1/2 the adult dose of Melatonin before bed. We are up to 3mg of melatonin, and still he doesn't sleep. I decided to call his MDA neurologist and spoke with his nurse. She was utterly useless. She asked if I had tried upping the dose of either medication. I said no because I am not a doctor and didn't feel comfortable with it. She then told me to establish a "bedtime routine" with a bath, a book, and bed. DUH!!! I guess she thought I was an idiot, but we have also tried that. We cannot seem to find a solution to the issue. The nurse told me that maybe he didn't require any more sleep than he was getting. I'm sorry, but a three year old needs more sleep than 5-6 hours a night!! Especially a boy with DMD who tires very easily. Now I don't know what to do. In an attempt to let my five year old daughter and my husband get some sleep, I am up at least 3 to 4 times a night trying to rock him to sleep. When I return to my bed, I hear him playing in the dark in his room. I am so tired!!! I teach 8th grade by day, and need to get some sleep! Does anyone have any other ideas? Or similar issues? I would be nice to know that I'm not alone.

Thanks so much!
Jen Collier a.k.a. "Sleepless in St. Augustine"

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hello ,Iam sorry to hear that,for my son he don't get to bed to 11:00 or 12:00 pm to sleep but he don't wack up to 7:00 am every day I get troble with him to get him sleep , he don't get tired all day and almost every dayhe go to swimming , I think the boys with dmd they get tired and they should slee lotof hours but what we see in our kids it defferent.
are your son take nap in day time if yes I think it beter if he is not taking any more nap ,for he sleep all night and you get both of you rest and triedhe don't eat or drink more sugar in afternoon .
Jen,
Is he on steroids? Is it possible he is taking those at night, instead of in the morning? That is what strikes me right off! I took steroids and one day forgot to take the dose until 3:00. . . there was no sleep that night!
Ang
Ryan isn't taking steroids yet because the doc won't start him until he is five. And he doesn't take naps during the day. The only sleep he is getting is at night.
Jen,

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!

Stefanie
Hi Stefanie,

Sorry to hear Sam is having thyroid problems along with DMD. He is such a cute little guy and it was really great meeting you guys at Disneyland. Just in case you guys don't know about this I wanted to bring up an issue with thyroid meds that I learned about a few years ago, having low thyroid myself. Take the medication before breakfast because it rev's up the system. I used to take it at nite before going to bed and had problems sleeping. As soon as I changed the time of taking the pill I began to sleep better. Never found any information about thyroid meds and insomnia in the Rx data.

You guys probably already know about this stuff but I wanted to mention it just in case,

cheryl
Ryan has had his thyroid checked and at that time it was normal. As I said, he doesn't take naps and has been taking two different sleeping aids as prescribed by his pediatrician. I do have to report that last night was better. He did sleep from about 8pm until 6am. A good night's sleep - FINALLY!!!!!!!

Hi Stefanie,

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:

Jen,

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!

Stefanie

Jen,

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?

Thanks,

Kira

Joshua used to have a similar bedtime routine so we started giving him melatonin at supper time.  It takes about an hour or so to work, but he's now up to approx. 10 hours sleep when it used to be, maybe, 5 hours all together.

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.

That sounds like my 3 yr.old as well. He has always been a bad sleeper  and I often wondered if it could be related to DMD .We recently started to give him melatonin and noticed an improvement. He now falls asleep around 9:30 as opposed to his usual bedtime of 11:30 (before the melatonin). I am so happy i read this post because i thought i was doing something wrong. My next appointment to make is with a Endochrologist to check his Thyroid. Thank you,stacy zamora  

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!

Kira

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