We are planning to start Deflazacort in a few weeks. Our son is on the small side and so the limited growth associated with deflazacort is a concern for us. We had planned to go with a week-end only dosing schedule hoping to minimize this side effect. But after talking with Dr. Biggar, we are thinking that is not the way to go. Is anyone using a 10 days on 10 days off schedule or a week-end only schedule? We had planned to do this for only 12-18 months and then switch to daily. He's only 5 and we just wanted to give him a chance to grow a little more.

Any insights, advice or information would be greatly appreciated.

Lisa

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We just started our son, Kyle - also 5, on deflazacort in July. He takes 21 mg each day. He has very mild symptoms, so honestly we do not notice much of a difference. The growth was a concern for us as well, but Kyle was pretty much right on target in his chart - even alittle on the high end for height. I guess our main decision was based extending his mobility as long as we can. I am 5' 9" (husband 6 foot) and oddly enough my parents are less than 5' 6" so if he's short, I don't really care. The on/off schedule wasn't discussed with us at all, so I guess that made the decision easier as well. Good luck - none of these decisions are easy. Donna
Lisa,
We are also planning on starting deflazacorte within the next few weeks. Our son will be 7 in January, and is only in the 3rd percentile for height and weight. The growth issue is also our biggest concern with the steroids. We are going to take our chances, as we are both under 5'6", and Jordan wasn't expected to be tall, anyway. We also have in the back of our heads that Jordan will go on human growth hormone shots in the future. Dr. Wong in Cincinnatti has started doing this, apparently with good results. We go to CHOP and they don't do it yet, but we were going to give him a year on the steroids first, anyway.

We attended the conference in Philadelphia, and both Dr. Biggar and Dr. Wong seemed strongly in favor of daily dosing, so that's also what we were considering. I agree with you on perhaps doing 10 days on 10 days off for the first year or so. We still need to talk to the dr. further about this.

Sorry I don't have any actual information, but it sounds like we're in a very similar place in trying to make this decision.

Regina
James is on 18mg daily (we also weren't offered any alternative schedule as he was on a trial at the time and all the schedules were the same), although we know he should be on higher dosage but he goes a little crazy when it's increased. We had a word to his doctors and they were happy to keep him on 18mg for the time being.

To be honest, his growth slowed down dramatically in the first year (we put him on deflazacort when he was 2). We figured it was the steroids, but since we are both quite tall we know he will still most likely be tall so we weren't worried about it. However, this past year (he turned 4 in May) he has grown 8cm so the theory about the steroids slowing down his growth is now defunct, at least in our situation. That said, it still might slow down at a later stage, but I would rather him be short and able to walk, than tall and in a wheelchair (or worse). For us, we just had to put it into perspective as if we were in his shoes.

Good luck, you know that whatever you decide won't be right or wrong, it will just be the choice YOU make for YOUR son.

Dears

my son diagnosed with DMD in jan 2016 and still since then i am in a nightmare, i am trying to be strong for my kids and hoping that God give me the strength. when i read your stories it is like reading mine, i believe we are all passing in the same situation and understand each other, that make me happy and sad in the same time i am happy that there is some one that understand my sadness and i am so sorry that there is some one passing through what i am in which is so so bad and sad.

i am living in Iraq i think no need to explain how bad the situation here is! no health care specially for such cases which consider it as rare!

my kids dr suggested to put him on deflazacort , but i dont know how i can decide? did anyone get benefit from it? is its advantage is more than disadvantage? is it really slow down the symptoms?

pls let me know any information that you have...

i see that most of you tried since 2008. but i dont see latest update about it

i appreciate if you provide me with any information

thank you and God help you all and save your children

i pray for all of us.

 



Sam...


We have two boys with DMD, both started on deflazacort at about age 3.  Our oldest is about to turn 11 and our younger 8.  They take it daily and have for years.  We do believe, along with physical therapy, that it has had a very positive impact on their condition.  In face, our oldest was screened out of a trial last year for being too fast.  I haven't had any doubts about putting our children on deflazacort.

thank you people for information!

My son started Deflazacort when he turnd 3. He is on stable daily weight dependent dose. Now after 3 years I believe Deflazacort was a good choice.

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