Replies to This Discussion

Permalink Reply by Susan Rathfelder on August 11, 2009 at 1:32pm

Hi, I think I am the one to answer who chose not to do steroids. We chose not to for a lot of reasons, the most important being that we were trying to get control of Jon's seizures. At one point he was taking 3 seizure meds for a total of 13 pills a day, we didn't want to add to that. We have never been given a definite DMD or BMD diagnosis and among his doctors there is no agreement. After a muscle biopsy and 3 DNA tests they have not been able to find his mutation or deletion. Jon is 18 and does use a wheelchair most of the time but still walks around the house, his heart and his pulmonary function are within normal parameters. He does have some slight enlargement of his left ventricle, but it still within normal and does not take any meds for his heart. He has fallen and broke his arm and his leg, but they were only buckle fractures and healed quickly. We don't regret our decision at all.

Susan

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Permalink Reply by Ofelia Marin on August 11, 2009 at 2:41pm

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

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Permalink Reply by Kelvinsmom - Michelle on August 11, 2009 at 8:02pm

Yes, Kelvin could run and jump, however, he couldn't jump real well until about age 4 or so, in other words, couldn't jump high with both legs good. He has always gotten around good and has always ran, just not fast. The steroids/supplements/night braces, etc. (not sure 100% what helped) have helped him run faster (real fast for him). Overall, not a huge improvement with steroids, as Kelvin has always been able to do steps without holding on, has always been able to get up from the floor with very little gowers, etc. but, I'd say that he just does everything better and faster. It wasn't overnight at all, as he has yet to have many serious challenges except with speed and endurance. It has helped both and put him much more in the "normal" range. At both sets of doctors, he improved his speed tests, getting up from the floor quicker without using hands, climbing stairs much quicker without holding on, etc. I know every boy is very different though. I think others have seen more drastic changes. I'd say it is doing him well though, as improving on anything would appear to be good with a DMD boy. I am glad we went with steroids and overall have had very few problems with them. Kelvin started steroids 3 months shy of age 6. He'll turn 7 next month, so he's been on them for 14 months now. Michelle

Ofelia Marin said:

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

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Permalink Reply by Joshua's mom on August 15, 2009 at 1:57am

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

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Permalink Reply by irishgirl on August 16, 2009 at 3:41pm

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.

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Permalink Reply by cristina chandler on August 17, 2009 at 7:51am

Hi
Thank you so much .
We are going with deflazacort, I am not going to even think about prednisone.
I hope my boys don't react too bad to this.
Like you say seems to be the only way to make their lives a little better without changing them a lot.
Cristina


irishgirl said:

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.

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Permalink Reply by christine good on August 17, 2009 at 10:57pm

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.

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Permalink Reply by irishgirl on August 18, 2009 at 8:04am

Oh, I forgot to mention that we purchase only Calcort. We did try the generic because you get enticed by the cheaper price tag. Rules and guidelines for drugs in the US and different from those in other places around the world. We tried the generic brand and it affected our son like Prednisone. The generic came from China. For us, we will not order any drug if it is manufactured in China, India or Mexico. Generics are normally the same - maybe with different fillers, but not always. We stick with the brand.
Just watch your boys, if there are subtle changes - maybe you can deal with them. If Delfazacort completely altered my son Prednisone did - he'd be off it right away. You obviously care and will do the right thing.

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Permalink Reply by irishgirl on August 18, 2009 at 9:11am

Kevin's Mom:
Hi, I was just reading some of your discussions. I'm curious about the coffee beans. If the steroids are causing ADD like symptoms in your child, why do you offer caffeine? If a child is already more hyper due to a medication, why add to that? I think I'm missing some point here - could you explain your thinking to me so that I can understand, please? We started our son on Prednisone and the ADHA effect reared it's ugly head. So, we totally switched to Deflazacort and all is wonderful. I cannot imagine, while my son was on Prednisone, offering him caffeine. I think I would pull my hair out - his as well.
I also noticed your list of supplements you give your child. Do they seem to make a difference? Are they, in your opinion, helping? I generally go by evidence-based publications and trials. There is no evidence to support most supplementation in MD other than CoQ10 and Calcium. But if something works for someone - it does. Doctors are humans and don;t know it all. I would welcome any comments! Thanks.

Joshua's mom said:

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

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Permalink Reply by cristina chandler on August 18, 2009 at 1:06pm

Hi
Thanks for that. I feel more confident now, I already order the deflazacort and just waiting for it.
What is the GI diet, I am still a little behind in my research.
I am glad your son didn't have any behavior issuses I hope my boys are going to do well also.
Do you give him the deflazacort in the morning? I don't know if makes any difference.
Cristina

christine good said:

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.

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Permalink Reply by Joshua's mom on August 18, 2009 at 11:44pm

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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Permalink Reply by irishgirl on August 19, 2009 at 7:54am

I understand the workings of ADD - your explanation made good sense. I cannot help but think that if a child shows signs of ADD - you then offer caffeine to bring the body up to meet the "some what racing" brain - you then have a far more active child, right? Is this how it works? So, I then think if you are overly exciting a DMD child, you are putting him at greater risk of muscle damage. Unless they are working off that energy in a swimming pool. DMD kids have to be extremely careful about not overexerting as once the muscle is damaged - thats it. If my thinking is not correct, please let me know as I'm not a doctor - I just tend to "think" too much sometimes. Thanks

Joshua's mom said:

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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