When are you suppose to start a child on supplements or steroids?

Does anyone know when is the best time to start a child with DMD on suppliments or steroids?

Also, what vitamins should a child with DMD take? Currently, my son is 4 years old. Any info would be a huge help - thanks!

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I started my son sort of 'willy-nilly' on supplements the day after diagnosis! Knee Jerk reaction I know!!! But, we stuck with Vit D and added calcium and CoQ10 initially. We were diagnosed at 3.5. Just before age 4, we began steroids. We see Dr. Wong and I think she now will begin boys (under normal circumstances) as early as 3 or so.....The earlier the better in my opinion so that progression is slowed ASAP. If you choose to do steroids, be sure to include Vit D and calcium for bone health. Good luck!!!
Hayden started about 4.5 years old. Less than a year after the diagnosis. The recommendations I've read seem to suggest that starting around the time a child plateaus is a good time, earlier may be better, but starting after that has declining effectiveness, at least with respect to steroids.
We got Sam's diagnosis about a month before he turned 3 and started steroids about a month after turning 3. Calcium and vit D were immediate. Co-Q10 was about 3 months later. We added other things in later years.
I should have mentioned, as soon as we started Hayden on Deflazacort, we also started with calcium and vitamin D as well.
Joshua started steroids when he turned 3 as well. We too started with vitamin D & calcium. Iron came shortly after. The build up of vitamins and supplements took approx. 3 years, but he is now taking 9 plus steroids.
Tanner was just diagnosed last year at 4 and we just started him on supplements about 2 months ago. We were so confused and weren't sure about supplements or dosing either. He is currently not on steroids but I think that is just around the corner, probably his next appointment. The supplements Tanner takes now are his daily chewable vitamin, omega 3-6-9, vitamin D, CoQ10, and Protandim. We tend to add in one thing a couple weeks apart and we are going to be adding in calcium next.
Thank you for all the responses... currently, my son is not taking anything. His doctor doesn’t feel steroids help before he starts to plateau, but I'm not sure how I feel about that. I will ask him about supplements at our next appointment. I’m so confused.
Lesley Wilson said:
Thank you for all the responses... currently, my son is not taking anything. His doctor doesn’t feel steroids help before he starts to plateau, but I'm not sure how I feel about that. I will ask him about supplements at our next appointment. I’m so confused.

Hi Leslie,
Just to help clear things up a little bit, we started Hayden on calcium and vitamin D as a result of being on steroids, not for any other reason. He also takes a multivitamin daily, but that's not really related to his condition at all.
Ok, I see... the supplements come with the steroids - not before. Thanks. If you don’t mind me asking; What was the turning point, at which you knew steroids was necessary? Was your son falling? Or having a hard time getting up?

Andrew Kerr said:
Lesley Wilson said:
Thank you for all the responses... currently, my son is not taking anything. His doctor doesn’t feel steroids help before he starts to plateau, but I'm not sure how I feel about that. I will ask him about supplements at our next appointment. I’m so confused.

Hi Leslie,
Just to help clear things up a little bit, we started Hayden on calcium and vitamin D as a result of being on steroids, not for any other reason. He also takes a multivitamin daily, but that's not really related to his condition at all.
Its nothing specific, but its all of the above. For us its hard, Hayden is our oldest child, and Cameron also has DMD, so we don't know what "normal" is until we see them around other kids their own age and can see side by side the differences in physical abilities.

Hayden's strength certainly hadn't been increasing in strength. The biggest thing I noticed was stairs. There was a time when he could mostly walk up a flight of stairs, though relying heavily on the banister. Later on, probably 6 months to a year ago, I noticed that without a lot of encouragement, he'd no longer try to walk up the stairs, he'd sort of crawl or ask for help. To me, that was a sign of plateauing. We'd talked to his Neurologist before, and he was of the opinion that when they start to plateau is the best time to start. The standards of care document (I'll link it below) agrees with that. There are some suggestions that starting earlier may be beneficial, but certainly once they start to plateau. So, we at our annual appointment this year, we asked for Hayden to start and he agreed and got us setup with Deflazacort.

I really recommend reading the standards of care document if you haven't already. I've haven't read everything in it, focusing more on the areas that deal with the onset of weakness and at the stage were at with our boys and whats in the relatively near future.

As for the supplements, some people are trying a lot of different things, and I haven't done enough research to know if or when we'll try them. For now we're sticking with steroids and vitamin supplements our doctors have recommended.

http://www.parentprojectmd.org/site/DocServer/TREAT-NMD_DMD_interim...
This was all really helpful - Thank you so much!!!!


Andrew Kerr said:
Its nothing specific, but its all of the above. For us its hard, Hayden is our oldest child, and Cameron also has DMD, so we don't know what "normal" is until we see them around other kids their own age and can see side by side the differences in physical abilities.

Hayden's strength certainly hadn't been increasing in strength. The biggest thing I noticed was stairs. There was a time when he could mostly walk up a flight of stairs, though relying heavily on the banister. Later on, probably 6 months to a year ago, I noticed that without a lot of encouragement, he'd no longer try to walk up the stairs, he'd sort of crawl or ask for help. To me, that was a sign of plateauing. We'd talked to his Neurologist before, and he was of the opinion that when they start to plateau is the best time to start. The standards of care document (I'll link it below) agrees with that. There are some suggestions that starting earlier may be beneficial, but certainly once they start to plateau. So, we at our annual appointment this year, we asked for Hayden to start and he agreed and got us setup with Deflazacort.

I really recommend reading the standards of care document if you haven't already. I've haven't read everything in it, focusing more on the areas that deal with the onset of weakness and at the stage were at with our boys and whats in the relatively near future.

As for the supplements, some people are trying a lot of different things, and I haven't done enough research to know if or when we'll try them. For now we're sticking with steroids and vitamin supplements our doctors have recommended.

http://www.parentprojectmd.org/site/DocServer/TREAT-NMD_DMD_interim...
We started Sam early (just turned 3). Sam is a fraternal twin, so we could easily see the differences. At 3, Sam could not climb stairs without his hands on the stairs, could not get up from the floor without using the couch or a chair to help him up (or a gowers if nothing was near him), could not jump, and really couldn't run either. Within months of starting the steroids, that all changed. Now, he's never been at the same level as his twin, and never will be, but he can keep up for the most part. The steroids did stunt his growth, and Sam is now on growth hormones, but I still would not go back and change our decision if I could.

Lesley Wilson said:
Ok, I see... the supplements come with the steroids - not before. Thanks. If you don’t mind me asking; What was the turning point, at which you knew steroids was necessary? Was your son falling? Or having a hard time getting up?

Andrew Kerr said:
Lesley Wilson said:
Thank you for all the responses... currently, my son is not taking anything. His doctor doesn’t feel steroids help before he starts to plateau, but I'm not sure how I feel about that. I will ask him about supplements at our next appointment. I’m so confused.

Hi Leslie,
Just to help clear things up a little bit, we started Hayden on calcium and vitamin D as a result of being on steroids, not for any other reason. He also takes a multivitamin daily, but that's not really related to his condition at all.

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