Hi, my son was just recently diagnoised with DMD, he is four years old in July...ummm I am thinking about putting him on stereroids soon and I thought that taking him to a natural path might be helpful in counteracting some of the side effects as well as providing him with things that might help provide him with more energy, anti-inflamitory foods and supplements as well as encouraging an overall healthy kid etc. etc....Has anyone used a naturalpath? Was it a good experience? Helpful?

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We took our 7 year- old son ( age six at the time) to see a homeopathic doc in Baltimore, Maryland.
At the time, we were giving our son several supplements such as: grapeseed extract pill, green tea pill, co q 10, creatine and glutamine powders, protandim, gingko, and calcium with vitamin d. So, he said it looked as if I had covered most of it. He recommended 10mg of NADH daily which we gave to our son off and on twice over the past year, per his recommendations. Initially, we observed our son having better speed and some improvement from fatigue from it but then noticed an increase in his calve size and less softness in the calve area. We stopped the NADH and resumed the protandim ( it's a long story) and noticed his calve muscles became a bit smaller in size and remain softer, now.
Out of all of the supplements I have ever tried on my son, and believe me, I have initated alot on my own, I can honestly say from observing a response on the outside of his body, I have only seen and felt improvements from protandim. Now, what the other stuff is doing inside, I am not sure I'll ever know. Some parents have reported speech and inattention problems, shyness improved after about 6 weeks of initiating protandim. There is alot on protandim on the messageboard. Dr.. McCord is the physican to contact regarding dosaging, etc. Our son has been on it since he was 5 years old and so far, he has not had any side effects from the supplement. I have given him short breaks from protandim several times for other reasons only to find harder and bigger calves. I'm sticking with this one.
I would personally recommend the steroids. We go to Dr. Wong in Cincinnati and she uses deflazacort which is a steroid that has less side effects than prednisone...If you google Dr. Biggar out of Canada, you can see some of the studies he has done on steroids. There are some parents that are totally against them. But, our son Will, has gained alot of motor skills with them and confidence as well. I know they have alot of negative side effects but many of those can be monitored or minimized. The studies do show that boys on steroids do much better from walking longer, to having better pulmonary and cardio functions....and less scoliosis....Yes, there are negatives but I think the steroids out weigh the negatives.
I know there are several parents who have gone with naturalpaths for supplements. I was thinking of going to one here in Seattle but haven't done it yet. There is a supplement - anti oxidant that many parents swear by called Protandim. If you google that, you can read about it. I believe the maker is a professors out of Colo. Other supplements we do are: Vitamin D3 - 2000 IU, multi vit, CoQ10 - 200 mgs, L-argiene - a protein, just added antacid and then he also takes calcium chews. We really try and watch his weight as well. Your son is a real cutie!
Well, I will respond to your other email now.
Char
Thanks so much for the input! I really appreciate all of the information both of you provided. I found a naturalpath in Renton and will let you all know how it goes....I most likely am going to put my son on stereroids, but I still would like the help of a naturalpath to provide added nutrition and supplements that might help my son's overall health, and energy.

Thanks again!
Hi Melinda,

My son just turned 4 in April and we visited Dr. Wong and team for the first time the week before his birthday. (He was diagnosed in Feb 2007) He hasn't started steroids yet, but will be in the next few weeks. Prior to our visit, we did try out Protandim, but I couldn't disguise the taste in ANY food we tried and he refused to take it, so it was a waste of money for us. As a woman who has always taken a more holistic approach to health, I was also very interested in hearing input from other parents who were giving their children supplements, etc. and taking a more natural approach.

While we were in Cincinnati, we also visited with the nutritionist who provided us with a wealth of information on how to counteract many of the side effects by maintaining a healthy, low sodium diet., increasing fluid intake, taking a daily multivitamin, calcium supplements, using Vit D3 (if needed) and CoQ10. We also discussed other dietary supplements and some of the supplements that many of the parents here have used. I came to the conclusion that our visit with her was enough to lead us on the right path. My concern about using some of the supplements is that they are not regulated and there have been no real studies done on how these supplements in combination with the use of steroids could have an adverse effect.

My suggestion would be to really feel out the naturalpath that you are going to visit and make sure that they really have an excellent understanding of DMD and steroid treatment before starting any supplements. You may also want to consider making an appointment with a nutritionist in your area that is affiliated with your local children's hospital.
hi

we tried homeopathy pure (no other anything) for about 8 months. it preserved flexibility but not strenghth. so decided to start steroids.
Hi Melinda,

I don't see a Natural path, but would be interested in hearing what you find out. I'm wondering if you are from the Seattle area? My 2 year old son Gavin was diagnosed in November 2007, we live in Covington, WA. We chose going to see Dr. Wong in Cincinnati and we found so much hope and great care. I would be interested in finding another friend close by who really understands. Tonya :-)

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