Replies to This Discussion

Permalink Reply by Paul Cliff on August 1, 2008 at 12:54pm

As a fellow new admittee to this club, please accept my condolences on the awful news that you've received. Alex (age 9) was diagnosed past October, and we've had Alex (age 9) on prednisone since January. There was a marked and immediate improvement in his energy level and ability to get around. Before starting, we went through the same process as the other parents above. Cheryl and I concluded that the evidence is pretty overwhelming that steroids increase life expectancy and postpone the wheelchair. At this point in history with real treatements just over the horizon and coming fast, I am convinced that preserving muscle tissue is going to be real important since none of the upcoming treatments is going to restore tissue that's already been lost. The side effects are real. Alex has gained some weight, and though he really only went from being very thin to about average I have been told by other parents that the trend can and he definitely loses his temper and becomes completely irrational more now than he did before. Sometimes it's just a little short of too much to take.

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Permalink Reply by Joshua's mom on August 2, 2008 at 5:50pm

Joshua was diagnosed when he was 6 weeks old. He started on deflazacort when he was 3. He has been able to go up and down stairs, jump, and is now riding a bike with only 2 wheels. There are pros and cons. His worst side-effect was the ADD one. He doesn't have it per say, but it is a side-effect. He isn't on any medication for it, but we give him coffee beans or espresso beans. (Many already know my reasons.) Ritalin etc. can cause heart palpatations where as coffee does not. Before Ritalin, the medication was based on caffiene. It makes a huge difference! As for weight gain, he is now 5 and weighs 44lbs. He is the size of a 3 y/o. Every case is different. You can try it, and if the side effects are too extreme for you, he can be weaned off. Most everyone though has seen wonderful results when it comes to the ambulatory side of things though.

Best of luck to you and yours,
Naomi

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Permalink Reply by Colin McKenzie on August 3, 2008 at 2:02am

Dear Jane

Our advice would be to try it and monitor the known side effects, take them on a full stomach in the morning and enjoy the huge energy and freedom these kids get from this treatment. Also take calcium and vitamin D to support his bone density as far as possible.

Justin is stronger two years on than he was when diagnosed at 5 and a half. A little moody and sensitive in emotion, no other side effects yet. He is one of those who have seen the benifits and little side effects. Others are not as lucky, but until you try, you will always wonder.

Good luck with the decision, if you go ahead, make sure you have a good understanding of the side effects and a good medical professional who is going to suport you in monitoring the progress. This is very important.

Also let us know if you decide to use them and the results as they are noticed.

Regards
Colin

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Permalink Reply by Kelly Bruhl on August 3, 2008 at 2:07am

My son is also 8 and was diagnosed about 4 months ago. He also has Asperger's. We started Prednisone about 7 weeks ago. He has gained nearly 10 pounds. He has been underweight for his entire 8 years! During this last week we are really experiencing what we are calling "steroid rage". We will be switching to Deflazacort in a week or so. We are hoping that helps with the mood swings and the eating.
I have read the research - sadly, steriods are really the only way to go right now. They will keep your son mobile longer and basically prolong his life. Keeping my son with me longer far outweighs anything negative that steroids can cause. Good luck!

Jane Williams said:

The general concensus I'm getting is that Deflazacort is much better overall than Prednisone, we may try him on Pred for a few weeks and see how it goes,my other main concern is that Ryan also has Aspergers syndrome and I worry about how this affects him emotionally, I'm particularly worried about "Steroid rage".Thank you one and all for your feedback,much appreciated
Jane

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Permalink Reply by Paul Johnson on August 4, 2008 at 12:40pm

Here's a paper on the topic
Corticosteroid Treatment of DMD

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Permalink Reply by Rebecca Saulsbury on August 5, 2008 at 12:59am

I just want to say, my husband and I AGONIZED over this. We had many intense heartfelt talks about the side effects and really worried (in the sense of nitpicking at something and tearing it to shreds)this one. We worried over Deflazacort vs. Prednisone, we worried side effects like no one's business, we worried cost to his health, weight, appetite,mood, peace of mind. In the end, we decided to try the Predisone with the assurance from his dr that he could go off easily if there were disturbing side-effects. Well, he's been on it for four months now, no change in eating habits (which were wholesome to start), no weight gain or swelling, only slightly more moody (which just means he caught up with his brother but nothing as tempermental as his friends!) so that his afternoons are a wee bit cranky. Occasionally, his self-control is a little waning. Other than that, the Monster we feared has stayed away. We'll do all the precautions, but I tell ya, he can walk around for longer, he can manage steps like he couldn't before and he likes being on the medicine for one reason: he can keep up better with his friends, which to a kid always left in their dust, is AMAZING.
You of course will do what's right for your child and your family. Everyone has to do it their own way. I'm just glad the drs could give my son something and this, sadly, is all they've got in their medicine bag right now.

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Permalink Reply by irishgirl on August 20, 2008 at 8:38am

Hi Jane:
Our son was just diagnosed last June and he too is 8. He will be 9 this November. Steroids are the single most best thing you can do for you son to help slow the progression of MD. He started on Prednisone and were scared to death that our little sweetie would turn ugly. After a month of the prednisone, we had to stop. Liam had become hyperactive - and I mean hyper. He also starting eating like a horse and gained nearly four pounds in a month. The Moon face started as well. No drug is worth turning your child's personality into a monster. A lot of kids tolerate Prednisone well. Liam did not. So we switched to Deflazacort and are SOOOOO glad we did. The hyperactivity is gone, Liam is Liam again. During the Prednisone month, I found myself disciplining Liam way more than usual. Generally, he doesn't that at all, but on Prednisone he did. With Deflazacort, he is not hyper and his appetite is back to normal as well.
We love deflazacort. But we have only seen slight strength changes in Liam. Prior to starting any steroid, Liam was running, slower than his peers, jumping, making obstacle courses in the yard, swimming, playing and never tiring out. Now, he seems a wee bit stronger, but was strong to begin with. That is where my frustration lies. Liam had so symptoms of this horrid disease - he was never a floppy baby, he hit the milestones on time, he's very bright, he doesn't fall down, he sometimes gets up from the floor in gower, but not all the time, he goes up and down stairs - all this he could do before starting steroids. He will be none in three months.
I latched on here because your son is 8. Did he have symptoms before the diagnosis? Have you all started steroids? Are you sure it's DMD and not early BMD? Please tell me more about your son.
Thanks,
Noreen/irishgirl

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Permalink Reply by Mortman on August 20, 2008 at 9:53am

Jane,
We have two sons with DMD. They are 17 and 13. When they were diagnosed, Deflazacort was not readily available. Our Dr.'s point of view was Pred or nothing and he pushed the Pred pretty hard. We had all of the same concerns you voiced. Our oldest son did not need the potential mood swings and weight gain that could have come with steroids. They just were not that knowledgeable 10 years ago about dosing and other supplements.

We chose not to give it to the boys. It was a very difficult decision. They used to say that steroids gained you one extra year of walking. I do not know if that one year would have made much of a difference. The disease has hit the boys pretty hard in spite of all of the afo's, pt, daily stretching, suppliments, etc. We were/are very much on top of things. Mike lost ambulation at 10 and Andy at 8. I envy the families who talk about their boys still walking at 16/17. It is hard to believe we have been living with wheelchairs for 7 years now. I am glad we did not have to worry about the weight gain from steroids along with the weight they can gain when they go into their chairs.

It was the right decision for us. We agreed never to beat ourselves up over what could have been. My advice to you is whatever choice you make, never look back. It will be the correct decision for your family.

Good luck,
Ed

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Permalink Reply by Tammy Gregory on August 20, 2008 at 10:04am

My name is Tammy and I have 2 sons with DMD. My oldest is 11 and has been on prednisone for about 1-1/2 years. The doctor recently decided my 7 year old needed to start prednisone. Kyle who's 11, has gained a lot of weight and has been having problems with his stomach and bowels. Their regular md doctor said the prednisone would cause this, but the head doctor said it was from the md not the medicine. We haven't started Travis who's 7 on it yet. The doctor and my husband seem to think it is helping but I' m just not crazy about them having to be on it.

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Permalink Reply by Jane Williams on August 21, 2008 at 5:12am

Hi Noreen
Thanks for your response.
My son had a lot of the symptoms they were just missed, he has always been a toe walker,although that was put down to aspergers syndrome (a form of autism),hes always been uncoordinated and clumsy- we just thought he took after me as I trip over my own feet! He has also always had HUGE calves.

Only last december did he start the gower manouvre and inability to climb ladders,stairs and couldn't get into my 4 wheel drive (now gone). So it made sense to us as we looked at all the signs and symptoms,just frustrating that its taken so long to diagnose we have changed paediatricians to one who actually seems to know what she is doing,she was amazing, actually came into our first neurologists appt with us. We haven't started steroids yet, I want to go straight onto deflazacort as I know my son and feel he would do better than on prednisone. Ryan will be nine in May and is taking all this so well,he puts his AFOs on at night with no complaints and is looking forward to getting a wheelchair, the better he is the more my heart breaks as I know I have a very special boy.

irishgirl said:

Hi Jane:
Our son was just diagnosed last June and he too is 8. He will be 9 this November. Steroids are the single most best thing you can do for you son to help slow the progression of MD. He started on Prednisone and were scared to death that our little sweetie would turn ugly. After a month of the prednisone, we had to stop. Liam had become hyperactive - and I mean hyper. He also starting eating like a horse and gained nearly four pounds in a month. The Moon face started as well. No drug is worth turning your child's personality into a monster. A lot of kids tolerate Prednisone well. Liam did not. So we switched to Deflazacort and are SOOOOO glad we did. The hyperactivity is gone, Liam is Liam again. During the Prednisone month, I found myself disciplining Liam way more than usual. Generally, he doesn't that at all, but on Prednisone he did. With Deflazacort, he is not hyper and his appetite is back to normal as well.
We love deflazacort. But we have only seen slight strength changes in Liam. Prior to starting any steroid, Liam was running, slower than his peers, jumping, making obstacle courses in the yard, swimming, playing and never tiring out. Now, he seems a wee bit stronger, but was strong to begin with. That is where my frustration lies. Liam had so symptoms of this horrid disease - he was never a floppy baby, he hit the milestones on time, he's very bright, he doesn't fall down, he sometimes gets up from the floor in gower, but not all the time, he goes up and down stairs - all this he could do before starting steroids. He will be none in three months.
I latched on here because your son is 8. Did he have symptoms before the diagnosis? Have you all started steroids? Are you sure it's DMD and not early BMD? Please tell me more about your son.
Thanks,
Noreen/irishgirl

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Permalink Reply by Kelly Bruhl on August 23, 2008 at 1:24pm

Dear jane,

We switched to the deflazacort about 2 weeks ago. The "roid rage" we experienced with prednisone is completely gone! My son actually told me that he feels like himself again! He is still hungrier than before, but doesn't freak out when we tell him he's had enough to eat. We have also noticed that he is going up stairs faster. -Kelly

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