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Thank you so much
All this really help me, I never tought in the side effects if I don't use steroids.
I really need to do a little more research and the best decision for my boys, the more time they can be healthy and happy.
Cristina
Hi Cristina:
My son is going on 15 years old and has been taking steriods since he was 5 years old. He started on a low dose at first every other day and then when he started to progress to a point when he could not get up completely from the floor, we went to every day. At this point, we started to notice changes but only in his face. Our son has never had any issues with behavior. Although at times he may get extremely frustrated and cries. He has never had any issues in school. I cannot speak for children with autism.
Our doctor always told us "would you rather deal with the side effects, or would you like your child to walk as long as possible?" We always wanted our son to walk and remain mobile for as long as possible. He only just recently, 3 months ago, became completely wheelchair bound. Only now is he being taken down off steroids, at our request, and will most likely stay on a low dose of prednisone after this time. Primarily the reason we requested he be taken off steriods is because of Mason, our son. He will be starting high school this year and would like to have everyone see his "real" face. Also, the reason for taking him down on dose was because I have read and heard that a low dose of steriods is good for people who are wheelchair bound because it curbs inflammation and can assist with keeping the heart and lungs stronger.
This decision is completely your decision but I would have to say I would never change our decision to have Mason on steriods and that this drug did help our son have many more years of mobility. I hope this helps. Let me know if you have any other questions.
cristina chandler said:Thank you so much
All this really help me, I never tought in the side effects if I don't use steroids.
I really need to do a little more research and the best decision for my boys, the more time they can be healthy and happy.
Cristina
Cristina,
You mentioned that deflazacort is hard to find. You can't get it in the United States, but you can get it from Canada or the UK with a prescription from your doctor. I got mine from getcanadiandrugs.com. After ordering online, I faxed them the prescription and copies of my husband's and my driver's licenses. It was really easy. The downside is that insurance will not cover it, so it is an out-of-pocket expense. If you google deflazacort you can find a formula to tell you how many mg per kg are typical. That would help you estimate cost when you check out the websites. My son was somewhere just above 45 pounds. He takes 3 6mg. pills every morning in yogurt. Hope this helps!
Danelle
hi cristina,
we were in the same boat as you. our son has autism and we didnt want to put him on steroids because of the chance he would have more anger than he already didnt know how to control.
this past april, we decided to put him on Deflazacort because he was unable to get off the ground without using an object to help him up (e.g. couch) or he would ask us to help him up. that was a month before his 8th birthday and, because he has been showing great strides with his autism, we put him on deflaz. about a month later, he was getting up off the ground without any help from us or objects. his anger was up a bit, maybe about what it was when he was younger, but now, it has tappered off, probably because he has gotten used to the drug.
So far, we have been lucky, not too much side affects...maybe more hair on the back of his neck, but he has light colored hair, so no big deal.
When dealing with another disorder besides DMD, you the parent have to do what you think is best. We took our time and we dont regret it.
Take care,
Christian
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