I have been reading different documents on kids with DMD and am a bit confused to say the least. I would like to know from other families regarding what vitamins, oils and supplements do your kids take. There is a mother who's child takes about 10 different types and is doing so well compared to many others. Do we have a discussion on this as I cannot find one and can we start something that families give info on what is helping them and what is not good for them etc. Am I missing the point somewhere or just confused??? I have heard of Snake oil too??? Deb Robins you have mentioned this before. I am just very interested to know what works and what does not work. Vitamins I know is not a cure but they certainly do help I believe - we have been told to take Calcium & Vit D at this stage. Any help, anything shared would be great to know.  Many thanks!!!!


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This is an area which is really deficient in a lot of research. I know there is a paper which is featured on this website by Zoe Davidson and that is looking at Vitamin D and calcium which I think are the basics. It also brushes on some other things like creatinine, and talks about possible benefits of these compounds.
I think this area will probably see more research in the coming years, as there has been a lot of discussion about what supplements kids should take, but no standardisation through research.

On a side note we give our son Vit D, calcium, creatinine and Co-enzyme Q10, this is all compunded in a liquid form which makes it possible to smuggle into his bottle! Oh we also have been using Pedia-Sure which we have been using as his formula for his bottles since we saw a dietician who told us this had everything (minerals/vitamins) he would need for a dietry supplement as he was a poor eater at the time. I only mention the pedia-sure as we found out when our son was still 1, and was loving his bottles, but not solids!
I just started giving our son 1oz of Miracle Fruits of the World, a superantioxidant with Noni and Acai and his speech has seriously doubled in a month...I am a huge fan of this stuff...it is definitely working for him without a doubt.
SO:

1oz Miracle Fruits of the World at night since body absorbs more while sleeping
SuperGummy's 4 a day (2 in morning/2 at night)
Melatonin (1mL) at night to help relax his body and help him with deep sleep since that is when body 'heals'
Culterelle Probiotics 1 pack a day
At least 2 servings of Cheese/2 servings of Milk daily for extra calcium/vit. D

Trey is 5 1/2 and was diagnosed with DMD 6 months ago. He is not currently on any steroids due to him not showing any signs of the disease except for toewalking and mild gowering. We are hoping to gain some height (he is only 7th percentile~looks more like a just turned 4 year old) and possibly wait to see some effects of the disease before steroid treatment begins due to the harsh side effects. This is our personal decision and I know many would disagree.
Thank you Jonathan, I have met Zoe and she is a lovely lady. We have been involved in some of the things she is busy with and it is great to know that something is happening. I will contact her and speak to her or look for her website too. I appreciate the feedback. Everything helps.

Jonathan said:
This is an area which is really deficient in a lot of research. I know there is a paper which is featured on this website by Zoe Davidson and that is looking at Vitamin D and calcium which I think are the basics. It also brushes on some other things like creatinine, and talks about possible benefits of these compounds.
I think this area will probably see more research in the coming years, as there has been a lot of discussion about what supplements kids should take, but no standardisation through research.

On a side note we give our son Vit D, calcium, creatinine and Co-enzyme Q10, this is all compunded in a liquid form which makes it possible to smuggle into his bottle! Oh we also have been using Pedia-Sure which we have been using as his formula for his bottles since we saw a dietician who told us this had everything (minerals/vitamins) he would need for a dietry supplement as he was a poor eater at the time. I only mention the pedia-sure as we found out when our son was still 1, and was loving his bottles, but not solids!
Hi Cori
Many thanks too for your feedback. When we found out about Kevin, we were offered putting him on steroids which would help him keep walking as he has always walked on his toes. We started steroids in the June 07 and have not taken him off since. It has kept him walking, his legs seem to just give way as he walks and the steroids have stopped this happening. Lately, he has been falling again but not as much as he did. Unfortunately, he has put on lots of weight from them and we have to weigh up keeping him walking or take away the steroids. Many decisions that one has to think about. They say the earlier they start on steroids, the better for the kids. I cannot quote anything as we were a very late diagnosis. I am happy where we are at this stage except for the weight gain, looking into this at the moment too to adjust his diet. Take care and my thoughts are with you. Love Jo

Cori said:
I just started giving our son 1oz of Miracle Fruits of the World, a superantioxidant with Noni and Acai and his speech has seriously doubled in a month...I am a huge fan of this stuff...it is definitely working for him without a doubt.
SO:

1oz Miracle Fruits of the World at night since body absorbs more while sleeping
SuperGummy's 4 a day (2 in morning/2 at night)
Melatonin (1mL) at night to help relax his body and help him with deep sleep since that is when body 'heals'
Culterelle Probiotics 1 pack a day
At least 2 servings of Cheese/2 servings of Milk daily for extra calcium/vit. D

Trey is 5 1/2 and was diagnosed with DMD 6 months ago. He is not currently on any steroids due to him not showing any signs of the disease except for toewalking and mild gowering. We are hoping to gain some height (he is only 7th percentile~looks more like a just turned 4 year old) and possibly wait to see some effects of the disease before steroid treatment begins due to the harsh side effects. This is our personal decision and I know many would disagree.
Jo Anne, what steroid is your son on? Deflazacort is harder to get, but typically does not have the big weight side effect that prednisone has. Some people have switched to Deflazacort for the weight component. We started with Deflazacort almost 4.5 yrs ago and have not seen any significant weight gain.....just a thought! Good luck!

Jo-Anne said:
Hi Cori
Many thanks too for your feedback. When we found out about Kevin, we were offered putting him on steroids which would help him keep walking as he has always walked on his toes. We started steroids in the June 07 and have not taken him off since. It has kept him walking, his legs seem to just give way as he walks and the steroids have stopped this happening. Lately, he has been falling again but not as much as he did. Unfortunately, he has put on lots of weight from them and we have to weigh up keeping him walking or take away the steroids. Many decisions that one has to think about. They say the earlier they start on steroids, the better for the kids. I cannot quote anything as we were a very late diagnosis. I am happy where we are at this stage except for the weight gain, looking into this at the moment too to adjust his diet. Take care and my thoughts are with you. Love Jo

Cori said:
I just started giving our son 1oz of Miracle Fruits of the World, a superantioxidant with Noni and Acai and his speech has seriously doubled in a month...I am a huge fan of this stuff...it is definitely working for him without a doubt.
SO:

1oz Miracle Fruits of the World at night since body absorbs more while sleeping
SuperGummy's 4 a day (2 in morning/2 at night)
Melatonin (1mL) at night to help relax his body and help him with deep sleep since that is when body 'heals'
Culterelle Probiotics 1 pack a day
At least 2 servings of Cheese/2 servings of Milk daily for extra calcium/vit. D

Trey is 5 1/2 and was diagnosed with DMD 6 months ago. He is not currently on any steroids due to him not showing any signs of the disease except for toewalking and mild gowering. We are hoping to gain some height (he is only 7th percentile~looks more like a just turned 4 year old) and possibly wait to see some effects of the disease before steroid treatment begins due to the harsh side effects. This is our personal decision and I know many would disagree.
My son takes several supplements and medications.

1/2 Protandim tablet
1/2 tsp Barlean's Kids DHA fish oil
1/2 tsp Cryo-Noni
100mg CoQ10
2500 IU Vit D3
Multi-vitamin
15mg deflazacort
growth hormones
Fosamax (for osteoporosis caused by steroids)
Hi Jo-Anne,

Your correct, there is a lot of confusion when it comes to supplements and or corticosteroids. You will be happy to know that Dr. Brian Tseng of MGH is working on this for parents. His hope is to create some real scientific data applicable to DMD. To date, he has tested over 60 different compounds and combinations of compounds in a platform at a small high though put screening company called Myomics. This new technology is able to measure the strength of human or mouse mini muscles when compounds are added to it (any compound!).

The whole process can be done in about two weeks and the data in less than 30 days! Amazing! Some of the compounds that were tested revealed an increase in contractual force - while others did not...and actually made the muscle fiber worse!

Much of this was published in the FASEB J in June 2009. Wouldn't it be great to know that Vitamin D and Calcium do not cause the contractual force to worsen?? Or what happens if we add a corticosteroid to the two?? These are really important areas to understand for the overall health of our children. Lastly, what if we can find a combination of compounds that are equal or better than corticosteroids - and don't have the side effects? By testing supplements and approved FDA compounds individually and in combination with each other - our hope is to find a regime that is helpful for the population and readily available - not making a new compound, using what is already available - in the right combination.


For more specific questions, please email Christine@JettFoundation.org. I would be happy to explore the published paper with you, answer questions. Share with you the results of the testing. Supplements are a personal choices...and I agree with you - they are not a cure, but anything that will keep our boys healthy until a curative therapy is found would be great!
Forgot to add Sam is also on 1/2 packet of Juven daily.

Laurie Paschal said:
My son takes several supplements and medications.

1/2 Protandim tablet
1/2 tsp Barlean's Kids DHA fish oil
1/2 tsp Cryo-Noni
100mg CoQ10
2500 IU Vit D3
Multi-vitamin
15mg deflazacort
growth hormones
Fosamax (for osteoporosis caused by steroids)
Joshua takes each day;

deflazacort
vit. D
magnesium
calcium
iron
B 12
omega 3,6,9
idebenone ( soon to be a medication everywhere, but already is in Canada )
carnitor
a learning factors multi-vitamin
folic acid

every morning plus melatonin at night
Hi, Was just wondering if you were giving the calcium and the deflazacort at the same time. Our doctor told us to, but we were later told that Calcium binds to many other medications, so it should always be taken two hours after or two hours before any other medication.
Jennifer

Joshua's mom said:
Joshua takes each day;

deflazacort
vit. D
magnesium
calcium
iron
B 12
omega 3,6,9
idebenone ( soon to be a medication everywhere, but already is in Canada )
carnitor
a learning factors multi-vitamin
folic acid

every morning plus melatonin at night
Thanks Christine, I will email you sometime. I am seeing our doctor on Wednesday and will find out from her. Kindest Jo

Christine McSherry said:
Hi Jo-Anne,

Your correct, there is a lot of confusion when it comes to supplements and or corticosteroids. You will be happy to know that Dr. Brian Tseng of MGH is working on this for parents. His hope is to create some real scientific data applicable to DMD. To date, he has tested over 60 different compounds and combinations of compounds in a platform at a small high though put screening company called Myomics. This new technology is able to measure the strength of human or mouse mini muscles when compounds are added to it (any compound!).

The whole process can be done in about two weeks and the data in less than 30 days! Amazing! Some of the compounds that were tested revealed an increase in contractual force - while others did not...and actually made the muscle fiber worse!

Much of this was published in the FASEB J in June 2009. Wouldn't it be great to know that Vitamin D and Calcium do not cause the contractual force to worsen?? Or what happens if we add a corticosteroid to the two?? These are really important areas to understand for the overall health of our children. Lastly, what if we can find a combination of compounds that are equal or better than corticosteroids - and don't have the side effects? By testing supplements and approved FDA compounds individually and in combination with each other - our hope is to find a regime that is helpful for the population and readily available - not making a new compound, using what is already available - in the right combination.


For more specific questions, please email Christine@JettFoundation.org. I would be happy to explore the published paper with you, answer questions. Share with you the results of the testing. Supplements are a personal choices...and I agree with you - they are not a cure, but anything that will keep our boys healthy until a curative therapy is found would be great!
I agree, it is all confusing, but, every boy is different, so, only you can judge what your son responds to (doctors can tell by some tests as well, for certain vitamins). I can tell you that we found out a bit over 2 years ago about our son. He started taking steroids a bit after that and in 2 years, he is still doing better. Just yesterday, he walked far, in boots, in mud to check out salamanders in a Vernal pool way back in the woods and it was amazing. He never complained, nor needed carried, etc. as it was even far and difficult to walk for me. 2 years ago, when we went to the same place (this is prior to steroids and supplements), he had to be carried the entire way, because of the mud and the difficulty walking through it. You would never have known that anything was wrong with him at all. Actually, no one has any idea anything is wrong with Kelvin now physically, because he does so well. Now, I have no idea why he is doing as well as he is. It could be his specific deletions, his other genetics, steroids, supplements, night braces, stretching, etc., but, I see that he is doing well, so, I keep doing what I'm doing. I did see a few immediate results from certain supplements, some, more a mental thing (Protandim, Barleans Cod Liver Oil for kids) and some, helped him in health and breathing immediately (Noni Juice). Sorry I can't help more, but, I think Kelvin is doing great and so do the doctors. They say he "should" be very stable for around 5 more years or so, that would put him at age 12 or so. After that, we'll see, but, of course, I'm praying for treatments, exon skipping 53, by then or anything else that may help. I know of parents though that do nearly everything that I do, and still, their children continue to progress much faster, so, again, no one really knows for sure. Kelvin will turn 8 in September and can run up stairs without holding on, has very little gowers, can run, rarely ever falls, only if bumped hard at school (he never falls at home or outside). His strength tests are very good too, near normal. Every child progresses differently and possibly supplements help some more than others. I do know that CoQ10 is very, very important too. Maybe one of the most important things we can do for their heart. Nearly every medical person I run into, can't talk more about CoQ10. My uncle nearly cured his congestive heart failure with it. The doctors said he'd only get worse and couldn't improve and they were shocked that his heart went back to normal. Prior to taking large amounts of CoQ10, he spent a week in the hospital getting his heart shocked back into rhythm. His heart is doing great now. Sorry I wrote so much. I do hope that you find the right combination to help your son.

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