I have now talked to several Chinese doctors both in Australia and China.
They all seem to be saying that traditional Chinese medicine can offer a lot to treat Duchenne.
Especially acupuncture.
Has anyone experienced it? Do we have any members with Chinese background?

Unfortunately, there has never been any large clinical studies of Traditional Chinese Medicine methods,
so it is hard to be certain about the claimed benefits.

I would really like to hear your opinion on this.

Sofia

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No, I haven't, but I have friends who go to a fantastic lady, who have been "cured" of items. I have never gone, but these women I know who got help for items that they needed, are very intelligent, 1 has her PHD and they believe it in 100%. I have already contacted an office and my insurance will cover most of it. It is pretty cheap. I did read some medical studies that had a child reduce his CK levels by tons be doing Acupuncture. I am up for anything that won't hurt Kelvin and I don't think it can hurt them at all, if you go to a top place for it. Thanks, Michelle
there was a study done in china on 10 boys with dmd. elizabeth vroom is named in the abstract (cannot seem to get full access to article if not a paying member / doctor). if i recall correctly, it mentions that not a great difference was achieved. however, i have also seen the article mentioning a cpk ngoing from close to 30k down to 15k. as it happens, i am having ndinner with a chinese doctor who practices acupunture tonight. i've already got a list of questions and will let you know what i find.
-jen
www.hopeforjavier.org
Hi Jen, Sofia
Many years ago, we became aware of a scientist/physician in China using a protocol that included an oral drink, accupuncture and physical therapy. It was suggested that boys were improved on this protocol. I am aware of one family that went to China to participate in this protocol. Elizabeth Vroom and Dr. Kaplan (france) went to China to observe. The liquid drink was boiled down from a mixture of things to include plants, herbs, centipedes (really), leaves, etc. The boys drank the 'tea' several times/day. They also received accupunture and physical therapy 2-3 times/day. Dr. Kaplan had the 'tea' examined and found that it contained plant-based steroids. There was some belief that the accupunture helped with flexibility and pain, but that there was no real benefit in terms of improved muscle strength. I have the paper and am happy to send it along if you are interested. Just send me a note. Pat@parentprojectmd.org
Warm regards,
Pat
Dear Jen.
How did you go with the doctor?
Sofia

Jen Portnoy said:
there was a study done in china on 10 boys with dmd. elizabeth vroom is named in the abstract (cannot seem to get full access to article if not a paying member / doctor). if i recall correctly, it mentions that not a great difference was achieved. however, i have also seen the article mentioning a cpk ngoing from close to 30k down to 15k. as it happens, i am having ndinner with a chinese doctor who practices acupunture tonight. i've already got a list of questions and will let you know what i find.
-jen
www.hopeforjavier.org
Hi Pat,
could you send me the paper to suvorova@ee.unimelb.edu.au

Meanwhile Phillip had two acupuncture sessions and I noticed rathe significant energy boost in him after each session. Then he had a bad fall at school.... So, I don't know.


Pat Furlong said:
Hi Jen, Sofia
Many years ago, we became aware of a scientist/physician in China using a protocol that included an oral drink, accupuncture and physical therapy. It was suggested that boys were improved on this protocol. I am aware of one family that went to China to participate in this protocol. Elizabeth Vroom and Dr. Kaplan (france) went to China to observe. The liquid drink was boiled down from a mixture of things to include plants, herbs, centipedes (really), leaves, etc. The boys drank the 'tea' several times/day. They also received accupunture and physical therapy 2-3 times/day. Dr. Kaplan had the 'tea' examined and found that it contained plant-based steroids. There was some belief that the accupunture helped with flexibility and pain, but that there was no real benefit in terms of improved muscle strength. I have the paper and am happy to send it along if you are interested. Just send me a note. Pat@parentprojectmd.org
Warm regards,
Pat
Hi Sofia

We gave it a fair trial once, so can only tell you our experience. In the late 90's there were good reports coming from China about a doc using both western and eastern treatments, Pat refers to it in this space I believe - and I was all set to take my son. I spoke to a parent who had been said not to go, but I thought I would try the next best thing and took Doug to a traditional Chinese doctor who examined him thoroughly and prescribed a herbal remedy that we brewed every other day and he drank every day for 3 months. It was nastly muddy stuff made from the dried ingredients. In combination with this treatment, Doug had between 2-3 sessions of accupuncture a week - he never really got used to it and this upset the accupuncturist and me too - but we gave it the time. He was actually off his feet by then - but only just. After about 2 weeks, I was delighted to feel him assist me in a lift and he bore weight through his legs, which he hadn't done for some weeks. I felt this was encouraging and knew it was the natural steroids in the tea. However, in all the weeks afterwards, this episode was never repeated. We persisted because we had to drive 1000 miles to see this reputed Chinese doctor and had stocked up on the treatments. But we couldn't see observable benefit - not that there might not have been improvements in overall health that are hard to detect. We fermented Kambucha for many months too prior to this and drank it as a family and that seemed to be uplifting for a while - but without double blind controlled study, how can a person know whether it is the natural high/low of the disease, coincidence, placebo or any number of studied effects or factors? You should read a book called "Snake Oil Science" by Bausell, 2007, because it is enlightening about the alternate meds industry & medical journal industry even if he doesn't mention DMD.

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