Hello everyone
I have to boys 6 and 4 with DMD. My husband and I said no to steroids. Mostly because the side effects.
My oldest also has autism and we are concern about behavior issues.
Is somebody in the same situation, I really need some advice, there is any kind af testing before the treatment? about side effects.
Thank you
Cristina

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Cristina,
To steroid or not to steroid is an agonizing decision. As far as I know there are no tests that can predict side affects. Originally, we were not going to use steroids. We began them a year and a half after his diagnosis (at age 6) because he was declining so much faster than we expected. We wanted to give him as much time to play and be a kid as possible. So, with a lot of trepidation we started them. You've probably read about the differences between prednizone and deflazacort. We went straight to deflazacort because of fewer side effects. Really, he has had very few and minor side effects physically and behaviorally. One thing we kept in the back of our minds, is that if the side affects were more than we expected, we could always discontinue the deflazacort. Please don't feel like I'm trying to talk you into it. When I was in the position you are in, I didn't like everyone seeming to push the steroids. For me, I had a defining moment when I realized that when he gets older, he'll have access to the internet to look up DMD. One of the first things he'll read about is steroids. While I felt comfortable about our original decision to not use steroids, as I felt there were real reasons to avoid them, I didn't know if he'd understand those reasons. What if one day he asked me, "Mom, why didn't you at least let me try?" So, we decided to try. We're about 5 months in and have seen increased strength. I have no experience with autism, but maybe someone else can respond to that part. Maybe you could try steroids with yur youngest son first.
Hi Cristina,

So sorry you have to make this choice. It's never easy because steriods are what I consider very serious meds for kids. My husband and I had different views of what to do when we were presented with the question of having our son take them or not. Paul, my hubby, wanted Alexander to start on Prednisone right away while I wanted to explore research for awhile before making that decision. But after looking at research documents I felt it best to give it a try then settled on Prednisone when we saw how difficult obtaining Deflazicort might turn out to be. Alexander has been on it for aprox. 2 years and there were behavior issues at first and they still crop up sometimes but we are managing through them. Sometimes he will lose his temper over nothing and exhibits frustration, but then his body is failing him when he wants to just be like everyone else. His classmates and teachers are all aware his infrequent outbursts are a side effect of not only the steriods but his condition. Everyone tries to ignore him when he does it and that works well. He always apologizes after and feels bad for getting upset and yelling at those around him.

Alexander, 10, was diagnosed at age 3 with PDD, a less severe type of Autism. He wasn't diagnosed by a physician but someone thru our public school system, when we tested him for kindergarten readyness. We took him to our ped right away to confirm PDD and his doc didn't seem to think there was anything to that diagnosis and thought the people who made the diagnosis wern't qualified to practice medicine, and we agreed. It seems, autism symptoms are somewhat more common in DMD boys. You didn't mention if your son has a severe case or how he was diagnosed but never the less - things can easliy be managed once you find out what works to calm your son. And, prednisone or deflazicort can be removed from the menu if you find it causes too many problems.

best,
cheryl
I also was unsure of the steriods and we did our research and found out that the Deflazacort has half the side effects. Then I met a man who has a 22 yr old son and he said to me he thinks the one thing all parents w/ DMD should do is have their sons on steriods.I think he said his son had behavior issues not autism but I was surprised by what he told me. He said that he started them when there wasn't much info on the effects it would have. Now all these years later Thank God his son didn't need back surgery and doesn't have lung or heart problems and his sons friends that didn't take the steriod all have these issues. He said his son could also walk until 18 and is in college now. He went with Prednisone and fed him very healthy. I also feed my son very healthy as much fruits and veggies as possible. I give him light soy chocolate milk w/ creatine in it and 7.5mm of Deflazacort (tip of a teaspoons so little) and he is Ok. I also give him D drops and gummy vitamins. I haven't even seen weight gain or bad behavior. Its a scary and hard call because this all stinks! You wont know until you try and Tanner is on the go 24-7. Its been about 5 months now and I do see a nice improvement.
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
Thank you Sarah
It really helps, I am very scare, but I guess the only way to find out is try it.
We really like to try delazacort instead of prednisone, but is really hard to find so will see.
Thank you so much
Cristina

Sarah said:
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
Thank you Danelle
Sounds easy. I will call the doctor and try to give this a try.
If is ok with you, I would like to let you know how it goes.
Thank you so much
Cristina

Danelle Dickerson said:
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
Thanks Christian
I feel much better and confident the give this a try. Samuel is having the same problems getting off from the floor and walking is hard for him too. Will see how it goes.
Cristina

MicahsDaddy said:
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
Cristina,
Please do let me know how it goes. Also, if you have any questions about anything, feel free to ask
Danelle
We found Deflazacort to be fine. We did have some anger issues (which we had prior to steroids as well). I "fixed" those with Barleans FIsh Oil Supplement and possibly the green tea extract (that seems to have helped, not sure how, but maybe the caffeine). Also, Kelvin was very hairy before steroids, so, well, he has a lot more hair, especially on his back, but the few things he has had, would not keep us from using the steroids. I think he is doing great, test results show it, he almost doubled his speeds, he runs super fast (that scares me as I'm always worried). We give lots of liquid calcium, magnesium and vitamin D to help his bones. He hasn't had stunted growth yet due to steroids, but he has only been on them for a year and a few months and certainly was short prior to steroids (he is only like 5% to 10% or so). I'm yelling at the kids right now telling them to stop running. Kelvin can now run so fast, I can't catch him in the yard. Of course, I'm not exactly fast, but I do try to get him. Michelle

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