My son will be 9 in 3 months.  His strength is still good but he seems to be getting so tired even after sleeping a good nine to ten hours.  He really does not struggle with stairs and still rides a bike.  I thought I should increase the meds from 21 to 24 mg but doc said no, only for strength.  Should I be concerned.  We try to limit him but he is very active and it's hard to do at times.....Should I be worried or is this normal?

Thanks

 

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my first thought was had he had a sleep study? i know they told me the first sign of sleep breathing problems was tiredness after a full nights sleep
Like Jenn said, I would request a sleep study. The dr always asks us how Justin is sleeping and if he wakes up tired or is tired through the day. All of those point to his oxygen levels dropping at night.

--Samantha
Hi Darcy,

Is your son taking steriods and/or his he going thru a growing phase? I've noticed both my sons (one w/o dmd) become extra tired when they seem to be out growing shoes & clothes overnight. Not sure if this is the same for other kids tho.

Sleep study might be very helpful.
Thanks Everyone, never thought about the sleep study and yes Cheryl, he did just have a growth spurt. I'm gonna keep a close eye on it and schedule an appt soon if things don't change. He recently had the stomach flu and fractured his ankle and is in a cast......
I'm 27 with dmd, around that age I pretty much was in the same exact situation sadly its pretty much the progression and as others have said it could also be oxygen levels dropping at night.

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