My 10 year old is definitely in the transitional stage.  He started using a mobility scooter in January.  At first he had so much more energy and was like a different child.  Since those first few weeks, however, he has actually gotten weaker.  He can no longer sit up in bed, slide to a chair, shower on his own, nor does he have any balance.  I understand that all these things do/will happen, but the bottom seems to have fallen out recently and the speed of his decline makes me think something else is going on..

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My son is 10, and at this point I have not seen a rapid decline. Is your son on steroids?

He is on prednisone and has been since he was 4.

Cathy, I am so sorry to hear this struggle for you and your son.  Yes that is exactly what happened to our son... just before he turned 9.  For some boys, I guess its like a house of cards, we see slow declines at first as we don't see the underlying muscle loss.  I'd definitely reach out to your doctor, or if you live near DMD clinic for checkup.  call anytime cell 503-351-0997. I'd love to share what we've found helpful. thinking of you and your son!! Danielle

Dear Cathy,

I'm afraid that every child is different from my experience.  It depends on the medications, the physical therapy they get, the time of diagnosis, etc. His K teacher noticed he lost his balance and fell, so we took him to the Pediatrician for "gross motor skills delay" at age 6.  We had NO MD in either family history, so we were leveled.  He was on Deflazacort (the less-side effect alternative to Prednisone) from about age 7-1/2 until he was 12 years old.  For us, we felt like we HAD to stop due to his dramatic loss of bone density and by that time, he was non-weight bearing and in a Powerchair full-fime.  I feel as though he has declined a LOT in the last 2 yrs.  It is heartbreaking to watch, but not sure it is abnormal.  I would echo Danielle in suggesting you talk to the doc or an MD clinic.  I wish you strength and the ability to enjoy every minute of your son!  As Pat Furlong has said, "Amazingly, all muscles are affected EXCEPT the smile muscle!"  I am so lucky to be my son's you are to be his.


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