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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Jennifer,

I re-read the discussion and you had said the doctor doesn't want to start him on steroids until he is 5.  Is there a reason for the age?  Joshua started Deflazacort when he turned 3.  He is now 8.

 

Naomi

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