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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Hi Leslie,
My opinion is a little different. I think vitamins and supplements can and should be started as soon as possible, especially Vit D3. Many DMD boys are deficient regardless of steroid treatment. You can do a blood test to check and start as soon as possible. I do not believe that starting steroids at age 3 as opposed to age 4 makes a significant difference in the long run. The literature definitely doesn't show either way. There are boys starting steroids late who progress better than the ones starting as early as age 3-3.5. I think starting at age 4-5 is fine. Let's be honest here, only new treatments can make as a significant difference in modifying the progression, certainly not the one year difference from age 3 to 4 for steroids. If they would not have side effects it would not be a problem starting them as early as possible but they do have and many doctors and parents have that in mind when they recommend them. Also, there are different steroid regimens, some have less side effects, many doctors have that in mind as well when recommending steroids for a very young boy. It is a difficult decision, I know. My son is almost 3 and I do not intend to start the daily regimen for the next 6-12 months. However, we have been giving him Vit D3 (his levels were low), CoQ10 and Protandim along with a multi-vitamin for a while now and we might start a different dosing regimen (with less side effects) of steroids in a few months. Also deflazacort is reported to have less side effects than prednisone.
Good luck!
Ofelia
Hi Leslie,
My opinion is a little different. I think vitamins and supplements can and should be started as soon as possible, especially Vit D3. Many DMD boys are deficient regardless of steroid treatment. You can do a blood test to check and start as soon as possible. I do not believe that starting steroids at age 3 as opposed to age 4 makes a significant difference in the long run. The literature definitely doesn't show either way. There are boys starting steroids late who progress better than the ones starting as early as age 3-3.5. I think starting at age 4-5 is fine. Let's be honest here, only new treatments can make as a significant difference in modifying the progression, certainly not the one year difference from age 3 to 4 for steroids. If they would not have side effects it would not be a problem starting them as early as possible but they do have and many doctors and parents have that in mind when they recommend them. Also, there are different steroid regimens, some have less side effects, many doctors have that in mind as well when recommending steroids for a very young boy. It is a difficult decision, I know. My son is almost 3 and I do not intend to start the daily regimen for the next 6-12 months. However, we have been giving him Vit D3 (his levels were low), CoQ10 and Protandim along with a multi-vitamin for a while now and we might start a different dosing regimen (with less side effects) of steroids in a few months. Also deflazacort is reported to have less side effects than prednisone.
Good luck!
Ofelia
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