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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
Hi Michelle,
Was Kevin able to run and jump before steroids? Was he able to do it when he was a toddler? Have you seen any other improvements?
Thanks,
Ofelia
Kelvinsmom - Michelle said: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
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
Have you tried Deflazacort? We started our son on Prednisone and it was absolutely horrid. It changed the personality of our son as well as his disposition. He ate like mad, and exhibited serious signs of ADHD. This is what we had to take into consideration - do we keep him on this horrid drug to extend his life - or get our wonderful child back and possibly shorted his life by offering no medications. We chose to try Deflazacort - the only side effect our son has in the "moon face." He is perfectly back to himself and doing very well. If our only drug option was Prednisone, he would go without because that is no quality of life for a once very laid back kid. I do feel that in the long run, Deflazacort will pay off, but again, our son is very a-typical in that if you look at him - you would never guess he's got DMD. He does run slower than his piers, but he does run and often. I hate that he's on drugs of any kind, but if they offer life extension without altering his personality and without having bad side effects, I'm all for it. Additionally, some kids have a night and day reaction to the power of the steroids. They can go from not being able to ascent a flight of stairs to bounding up them. Our son never made significant strength chances as he was very strong to begin with. Believe me, I have thought about stopping the Deflazacort often, but for us, it is a far better drug and easily tolerated by our son. One of my biggest fears in that our son would become a tremendous over eater and THAT is the worst thing in this disease. Fat makes muscles work harder and that, in turn, damages muscle tissue. Don't give up and just allow DMD kids to eat freely - fat and obesity hurts DMD children. Each child will react to each drug differently. Your kids may have no side effects at all. You can always try them and then wean off if necessary. For now, the steroids are the only way to slow the progression of this disease - the only way. I know that you, as a parent, will make the correct decision for your children. Everyone is different as is every child.
The steroids can cause ADD side effects. When it comes to ADD, the body can't keep up to what the brain is doing and is working at a different level which makes it hard to concentrate. The body is ' _' and the brain is '-' for example. When we give Joshua chocolate covered espresso beans ( or caffeine from a natural source ), it brings the body's level up to '-' but doesn't increase the brain activity so they are now working at a higher level, but at the same level, so his behavior becomes 'normal'. And I must say... it works fast! I hope that made sense. That is how the doctor explained it when he suggested them because of the effects Ritalin etc. have on the heart. Everything before Ritalin was based on caffeine.
Naomi
Kelvinsmom - Michelle said: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
Kian was also Dx with mild autism. We went right to Deflazacort and had a very easy time getting it. The only s/e was about 10 lbs. wt. gain, which we are minimizing through a low GI diet. Not much difference with the behavior. Maybe a bit shorter fuse. I was also against steroids till I did the research.
Joshua is on Deflazacort and still has the ADD side effect. I wasn't sure if my explanation was legible or not... The reason we give the coffee beans is because the brain is working at a higher level than the body and when you give caffeine to a child with ADD, it has an opposite effect on them than it does on anyone who doesn't. How it works is it increases the body's activity to the same level as the brain's. It then has the brain and body working at a higher level, but at an equal level which then calms them. I know it sounds impossible, but many who aren't on medications, don't have Duchenne, or any other disease, and are ADD have tried it, and it worked. It even works for adults who are ADD. It's safer than any medications for the disorder and even Joshua's teachers swear by it now. Once he starts to show signs of not being able to pay attention, becoming hyper or angry, or even emotional, the teacher can give him a bean in the classroom because it is not a medication and they see a difference in less than 5 minutes. He only needs to be given the beans, on a bad day, maybe 3 times. He's almost 7 now and weighs 64lbs so we give him 2 beans in the morning and only one bean there after. I hope this explains it for you.
Naomi
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