Right now we r trying to decide the best course of action.... Does anyone have knowledge or experience of NOT using steroids... Any advice/ experience welcomed!!!

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Very good question.  I would also be interested in this, since our son is struggling with weight gain, even though his diet is well under control.  He's doing great at 9, but continues to gain weight given limited physical activity.

As we all know, weight gain is one of the worst things to happen, since it is even more difficult for him to be mobile/active and likely causes accelerated muscle damage... :(

I believe that not using steroids will severely decrease the life expectancy of your child. Non steroid DMD patients have a life expectancy of 15 - 17 years. Proper health and steroid use can almost double that. The problem with steroids is that you open up a whole mess of other problems: Calcium deficiency and bone density loss, weight issues, behavioral issues, heart issues, liver issues are the major ones. Depending on the steroid you choose you may also be adding some other medications to assist with bones, heart or liver.

My son has been on Deflazacort since he was 6. He is now 19 and doing very well. Without the steroid he would not be here.

If you are worried about weight gain get a nutritionist involved and get your boy into the water as often as you can. Exercise in water is the best for DMD boys because of the resistance of the water and the low impact nature of the movements.

Thanks for the advice Fred.  We have a pool and my son lived in the pool all summer.  We'll also get him in a pool weekly during the cold season.  Need to move to a warmer climate...

Unfortunately, we're still struggling with weight.  I wouldn't call him fat, he's just solid and built like a tank.  Too bad he's not built like his skinny older and younger sisters....  :)

Fred Luchetti said:

If you are worried about weight gain get a nutritionist involved and get your boy into the water as often as you can. Exercise in water is the best for DMD boys because of the resistance of the water and the low impact nature of the movements.

Kyle is over weight as well. We are having issues getting him into a pool on a regular basis. I will not bore you with the details just know that people in bureaucratic positions are more concerned with covering their asses then they are in serving the needs of the handicapped. I had one senior administrator for the City of Toronto tell me that I needed to a) supply insurance and proof of said insurance for my hoyer lift that I purchased to get my son into the pool, b) pay a rental fee for the space my hoyer would take up and c) insure that we would be the only ones using said hoyer lift. We said no thank you and are still looking. If they had any idea how important it is to have Kyle in the water on a regular basis they would not be so concerned about their collective ass.

I am so glad that you can get your boy into water on a regular basis, next house I have will have an indoor pool.

Yes, we now all too well about fighting 'the system'.  We've just started to expect this in everything we do for our son... :(

I agree on the indoor pool.  Would be great to have during the never-ending Michigan winters...  :)

Fred Luchetti said:

Kyle is over weight as well. We are having issues getting him into a pool on a regular basis. I will not bore you with the details just know that people in bureaucratic positions are more concerned with covering their asses then they are in serving the needs of the handicapped. I had one senior administrator for the City of Toronto tell me that I needed to a) supply insurance and proof of said insurance for my hoyer lift that I purchased to get my son into the pool, b) pay a rental fee for the space my hoyer would take up and c) insure that we would be the only ones using said hoyer lift. We said no thank you and are still looking. If they had any idea how important it is to have Kyle in the water on a regular basis they would not be so concerned about their collective ass.

I am so glad that you can get your boy into water on a regular basis, next house I have will have an indoor pool.

the relationship between longer lives and steroid use is not a factual statement. ask a medical professional. no disrespect fred but those are dangerous statements you are making.

40 years ago DMD kids were dropping in their mid teens. Today they are living longer lives. There is no Doctor that is going to go on record to say yes it is the steroid that is doing this. This is because there are many side effects, not all boys take to the steroid the same way and there have not been enough long term studies to support that theory.. Please understand that these postings are MY OPINION. My opinion based on all the research I have done and 13+ years of dealing with this disease first hand. This I believe to the very core of my being: if we had chosen NOT to use a steroid, Kyle would not be alive today.

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