I've been researching some supplements and spoke with a knowledged person on them, he recommended DMG, he wasn't sure about CellFood for someone young. I found Gamma Oryzanol on my own. It is a vegetable-derived alternative to Anabolics and is given to animals for muscle building, not sure if humans take it, but I'd guess. Does anyone know anything about any of the 3 items listed? I'm seeing that DMG might be good, as it helps keep oxygen to the cells (well, says it does). I won't add stuff for Kelvin, just to add, as I don't want to put too much in him, but, if it is found to be great, I might. Thanks, Michelle

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not sure about any of them, but i stay away from anything that builds muscles.

If you are looking for a supplement that fights off free radicals and helps prevent tissue damage (like how Gamma may do), we started giving Micah something called Miracle Fruits of the World. It's really high on the ORAC scale and does carry ingredients that parents are already giving their kids (Pomegranate, Mangosteen, Noni, Acai, Goji Berry, Blueberry, Green Tea, Cherry, Ginkgo Biloba, Concord Grape Concentrate, Grape Seed Extract, Resveratrol).

I don't know if it helps any as we just started using it about a week ago.

Here's their site: http://www.drinkables.com/mfotw.html

i also attached a word doc that describes what each ingredient does.
Attachments:
Where do you purchase this? I do have Kelvin on muscle builder items, as many doctors at the convention a year or so ago were asked, if this is your child and he had DMD, what would you give your son. I base my decisions and supplements on them, other doctors, top nutritionists, folks on here, my nephew who is a world competitive bike racer (he has studied muscles in more depth than anyone I know), etc. The doctors continually tell us, whatever we are doing, keep doing it, so, well, we are and hate to change anything. The item you listed looks great. We use Noni, which I'm a huge, huge promoter of. I've put a lot about the benefits it has done for Kelvin. There was no other explanation. Thanks, Michelle

MicahsDaddy said:
not sure about any of them, but i stay away from anything that builds muscles.

If you are looking for a supplement that fights off free radicals and helps prevent tissue damage (like how Gamma may do), we started giving Micah something called Miracle Fruits of the World. It's really high on the ORAC scale and does carry ingredients that parents are already giving their kids (Pomegranate, Mangosteen, Noni, Acai, Goji Berry, Blueberry, Green Tea, Cherry, Ginkgo Biloba, Concord Grape Concentrate, Grape Seed Extract, Resveratrol).

I don't know if it helps any as we just started using it about a week ago.

Here's their site: http://www.drinkables.com/mfotw.html

i also attached a word doc that describes what each ingredient does.
The cheapest I have seen is at COSTCO. Normally, $18.99, but they currently have $3 off.

http://www.costco.com/Browse/Product.aspx?prodid=11227839&whse=...

We tried AgroLabs Noni, but it didn't taste too good, so Micah refused to drink it. Miracle Fruits of the World has a strange taste to it, but it is tolerable. If "Micah likes it", then it has to be somewhat decent.

As for Muscle builders, the reason I don't agree with them is because it is doing what we don't want...buiilding muscle...or, in our case, trying to build something that is unable to build. In my mind, this could potentially speed up the process of fibrosis.

I don't know enough about creatine, which was mentioned at conference 2008, but i think using small levels of it is fine. And, if memory serves me correctly, you wouldn't want to use creatine that is mixed with other ingredients that help with muscle mass. I don't use creatine, but I remember reading something from other parents a while back on the old message board that mentioned what to watch out for when using ceratiine and how much to give. This may be a good MarcosDad question.
You could be right about the muscle building, but I don't think anyone knows for sure. Arginine however, has been proven in Clinical Trials to work great with Deflazacort, instead of Deflazacort alone or Arginine also, so hence, why we use it. We only give 2.5 g of Creatine, a low amount. Also, we don't give much Glutamine either. Kelvin will drink almost anything, so I'm excited to see this product and may put him on it. Certainly can use all the "cell protectors" that he will take. Even though we don't know much really, I feel that being healthy, is a plus, no matter what and Kelvin hasn't been sick for over a year, except a minor cold. The healthiest he's ever been. Thanks again, Michelle

MicahsDaddy said:
The cheapest I have seen is at COSTCO. Normally, $18.99, but they currently have $3 off.

http://www.costco.com/Browse/Product.aspx?prodid=11227839&whse=...

We tried AgroLabs Noni, but it didn't taste too good, so Micah refused to drink it. Miracle Fruits of the World has a strange taste to it, but it is tolerable. If "Micah likes it", then it has to be somewhat decent.

As for Muscle builders, the reason I don't agree with them is because it is doing what we don't want...buiilding muscle...or, in our case, trying to build something that is unable to build. In my mind, this could potentially speed up the process of fibrosis.

I don't know enough about creatine, which was mentioned at conference 2008, but i think using small levels of it is fine. And, if memory serves me correctly, you wouldn't want to use creatine that is mixed with other ingredients that help with muscle mass. I don't use creatine, but I remember reading something from other parents a while back on the old message board that mentioned what to watch out for when using ceratiine and how much to give. This may be a good MarcosDad question.
from my understanding of products you are using, those all sound good.

as for the product i mentioned, i went to costco to get the AgroLabs Pomegranate. We used to get their CoQ-Blue product which has CoQ10, Blueberry, and Goji berry, but they stopped selling it. I was excited when i saw this new one from a different company.
Hi Michelle,
My son Ryan is going to turn 7 in july.He is also very active like Kevin. We found out on october 25, 2008. Ryan has a deletion of 48-50. Ryan is taking delazacort, protandium, green tea extract, haelan, Multi vits, Coq 10, cal + vit D3,and also drinks a packet a day of Juven. We are going to start Noni juice soon. I wanted to know what time of the day do you give Noni and is it given empty stomach or after food. Have a great day!
Creatine, Glutamine and Arginine were recommended by several doctors participating at the conference. Or I should not say "recommended" but they said that they would give them to their child if he had DMD.

I just asked Dr. Wong about adding Creatine and she recommended using 0.1g/kg. She had no concerns about adding it and she also mentioned a clinical trial where they used it for other neuromuscular disease.

Arginine was found to upregulate utrophin and arginine+steroid resulted in even more upregulation in a paper published last year. I do not know what dose should be used.



Kelvinsmom - Michelle said:
You could be right about the muscle building, but I don't think anyone knows for sure. Arginine however, has been proven in Clinical Trials to work great with Deflazacort, instead of Deflazacort alone or Arginine also, so hence, why we use it. We only give 2.5 g of Creatine, a low amount. Also, we don't give much Glutamine either. Kelvin will drink almost anything, so I'm excited to see this product and may put him on it. Certainly can use all the "cell protectors" that he will take. Even though we don't know much really, I feel that being healthy, is a plus, no matter what and Kelvin hasn't been sick for over a year, except a minor cold. The healthiest he's ever been. Thanks again, Michelle

MicahsDaddy said:
The cheapest I have seen is at COSTCO. Normally, $18.99, but they currently have $3 off.

http://www.costco.com/Browse/Product.aspx?prodid=11227839&whse=...

We tried AgroLabs Noni, but it didn't taste too good, so Micah refused to drink it. Miracle Fruits of the World has a strange taste to it, but it is tolerable. If "Micah likes it", then it has to be somewhat decent.

As for Muscle builders, the reason I don't agree with them is because it is doing what we don't want...buiilding muscle...or, in our case, trying to build something that is unable to build. In my mind, this could potentially speed up the process of fibrosis.

I don't know enough about creatine, which was mentioned at conference 2008, but i think using small levels of it is fine. And, if memory serves me correctly, you wouldn't want to use creatine that is mixed with other ingredients that help with muscle mass. I don't use creatine, but I remember reading something from other parents a while back on the old message board that mentioned what to watch out for when using ceratiine and how much to give. This may be a good MarcosDad question.

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