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Supplements / Herbs

Could I get some feedback on what kind of supplements and herbs you may be giving your boys. Our Son takes Deflazacort, CoQ10, Calcium, Vitamin D, Fosamax. Are there other things that you may recommend that are working for your sons?

Thank you

Cinni

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Permalink Reply by shashi champaneria on June 28, 2010 at 2:28am

I have seen a good article at ww.lef.org regarding nurtritional support for muscular dystrophy - see my discussion in the steroid section.

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Permalink Reply by jenn on June 28, 2010 at 3:06pm

one quick note ...we have recently become aware that if your child is going to participate in a clinical trial ( specifically exon skipping as we have 2 sons with exon 52 deletion and can participate in upcoming trials) they dont want the child to be on suppliments such as coq10, idebenone, protandum, etc, for 6 mos pre trial... we have stopped those as preparation, our dr, dr wong at cinci childrens recomended we do so as preparation for possible enrollment.

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Permalink Reply by Joshua's mom on June 28, 2010 at 5:43pm

Joshua is 7 1/2 years old and weighs 57 lbs. This is what he takes each day. Though, now that school is out, he takes the melatonin every second day.

Folic acid 1 mg
Vitamin D 1000 IU
Calcium (333mg) & Magnesium (167mg)
B stress Complex w/ Vit. C & E + zinc & copper
Omega 3-6-9 1200mg
Iron (ferrous gluconate) 300mg
Idebenone 150mg x2
Learning Factors - Advanced School-Aid (for adults too)
- (Fish oil, Omega 3, Borage Oil)
Deflazacort (Rx)
Multivitamin
Melatonin (pm)
Levocarnitine (Rx)

Hope this helps some. As for the trials, Joshua is going to be part of the ACE-031 Phase II trial and all the supplements he is on is okay for this one.

Naomi

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Permalink Reply by Laurie Paschal on June 29, 2010 at 4:13pm

I hadn't heard the protandim, but I do know (straight from the Columbus trial site) that boys will only need to be off CoQ10 for 1 month prior to starting the trial.

jenn said:

one quick note ...we have recently become aware that if your child is going to participate in a clinical trial ( specifically exon skipping as we have 2 sons with exon 52 deletion and can participate in upcoming trials) they dont want the child to be on suppliments such as coq10, idebenone, protandum, etc, for 6 mos pre trial... we have stopped those as preparation, our dr, dr wong at cinci childrens recomended we do so as preparation for possible enrollment.