My oldest son,Jonah, has DMD. He is almost thirteen and still walks some and uses a scooter at school. We stared prednisone back in July '08 and we've seen the side effects as you all know. Now my youngest son, Carter, has been diagnosed with DMD and we're not sure if we should start him on steriods. Any opinions would help    THIS SUCKS!!!

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The choice to use steroids comes down to whether you think the side effects (and risks) outweigh the benefits.  The benefits are well documented.  The side effects vary from child to child.  In some cases, they aren't worth the benefits.  In some cases, they are.  Only you can decide, there's no right or wrong answer.

Steroids are part of the care recommendations that came out of a global panel of 84 DMD experts, which is why you should consider it.  Details at this webpage: http://www.parentprojectmd.org/site/PageServer?pagename=Care_elemen... 

Good luck.

There are a lot of side effects, but I don't regret keeping my son on them. I do prefer deflazacort over prednisone. We started him on prednisone at 5 1/2 years. He was on the weekend dose until age 11. We started deflazacort daily in June, 2008. It daily dose seemed to increase his strength and he didn't seem to have mood swings as much. Bradley is 15 1/2 now and still walks using a wheel chair for long distances. I do think he has a much milder DMD than most. Although previous Muscle MRIs showed major muscle deterioration and scarring making the doctors wonder how he is doing so well and still walking. I believe the steroids help a lot, but I think this is also a miracle.

Hi,

I NEED THE EXPERIENCE OF PEOPLE USE 10 DAYS ON/OFF STEROIDS,PLEASE.

I AM SWITCHING MY SON FROM DAILY TO 10 DAYS ON/OFF

Hi Moein. I don't have any experience yet, but my son's doctor has recommended the 10 on/off regime to us. We're due to start in the new year. He said it has less side-effects than daily dosing so should allow my son to grow. Also less weight gain. That said, he maintains that the immediate and long term benefit isn't as good as daily dosing (his opinion) but is worth it if your son is still functioning well. We may switch to daily in the future if our son needs it/nothing else has come along that may help too.

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