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!!!!


Views: 504

Reply to This

Replies to This Discussion

Hi Cori!

How old is your little Trey? As far as the Miracle Fruits of the World, is it really that great? My little boy Landon has speech issues also and I am always looking for safe and effective supplements for him. He is not on many things as of now...Deflazacort, creatine and glutamine, calcium and vit D and a daily multi vit.That is it for now but I know I need some form of an antioxidant and "preserving" type supplement. That Miracle Fruits looks interesting. Email me if you will at joanne.hathcoat@yahoo.com and let me know what you think about it if you will! Thanks so much!!

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.
You might want to consider Protandim. Some parents reported cognitive/speech improvements and it might help reducing fibrosis.

JoAnne Hathcoat said:
Hi Cori!

How old is your little Trey? As far as the Miracle Fruits of the World, is it really that great? My little boy Landon has speech issues also and I am always looking for safe and effective supplements for him. He is not on many things as of now...Deflazacort, creatine and glutamine, calcium and vit D and a daily multi vit.That is it for now but I know I need some form of an antioxidant and "preserving" type supplement. That Miracle Fruits looks interesting. Email me if you will at joanne.hathcoat@yahoo.com and let me know what you think about it if you will! Thanks so much!!

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.
Protandim immediately helped Kelvin with cognitive delay. He is still quite delayed, but, within a very short time, he changed dramitically with Protandim. Put it like this, he couldn't even use a mouse on his computer, but, within 2 weeks he was not only able to use the mouse, but, was able to completely play Zoo Tycoon, which is very detailed. Michelle

Ofelia Marin said:
You might want to consider Protandim. Some parents reported cognitive/speech improvements and it might help reducing fibrosis.

JoAnne Hathcoat said:
Hi Cori!

How old is your little Trey? As far as the Miracle Fruits of the World, is it really that great? My little boy Landon has speech issues also and I am always looking for safe and effective supplements for him. He is not on many things as of now...Deflazacort, creatine and glutamine, calcium and vit D and a daily multi vit.That is it for now but I know I need some form of an antioxidant and "preserving" type supplement. That Miracle Fruits looks interesting. Email me if you will at joanne.hathcoat@yahoo.com and let me know what you think about it if you will! Thanks so much!!

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.
Joshua was on Protandim for a couple of years (from the age of 3-5). He was in speech therapy and occupational therapy during that time too. Once he had developed enough not to need the therapies anymore, the Protandim started to bother him like he was losing his therapy effects. We took him off of it for a week to see what it would do, and he became stable again with speech and motor skills. It's a great supplement, but I've met others where they too said there is almost a maximum amount of time you can take it. It worked great when it came to concentration on working with his own body, not school though. It may be only him though. Everything effects everyone differently!

Joshua has been on CoQ10 since the steroids started. It cleans the system of anything it doesn't need or hasn't used. We switched over to Idebenone close to a year ago. It is a stronger form of CoQ10. That made a HUGE difference!!! It almost enhances the steroids because it also goes throughout the entire body... not just the liver,kidneys,etc..

Naomi
My son and all of his friends with DMD all had really low levels of vitamin D. The doctor did a blood test to determine this. They are all on 2,000 IU twicw per day plus calcium.

Christine, could you please forward me the link to the results for the 60 compounds Dr. Tseng tested?  I was unable to find it on the FASEB site.

Thanks!



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!

Hi Jo-Anne,

Did you ever find out anything helpful other than the calcium and vit D? 

My son takes, Deflazacort, Barleans Cod Liver Oil, Focalin for ADHD, mutivitamin and Melatonin at night

He is very stable at this point as far as muscle weakness goes. He has only been on the steroids for a year and a half and we  have seen his endurance improve and strength has remained the same which is good. He has not gained a bit of weight on Deflazacort at all. Unfortunately he is having some behavior side effects, very hyper and irritable, luckily he has not been aggressive nor does he have outbursts which I think is because of Focalin and Barlean's. I agree with Michelle every child is different, nothing to me seems consistent at all and I agree it's frustrating, but unfortunately it's the nature of the disease. I do believe though in trying everything possible, if it works fantastic, if not at least I know I 've tried.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service