My son has Duchenne's Muscular Dystrophy. I found an alternative treatment that seems promising.

On March 22nd my life was changed forever. My 7 year old son was diagnosed with Duchenne's Muscular Dystrophy. He had been diagnosed earlier in life with Asperger's but we have now determined this was obviously an incorrect diagnoses. For the first two days I was very depressed and didn't know what to do but then I snapped out of it and began educating myself on the disease, what to expect, and any possible treatments. At this point there is no cure for DMD. (If you don't know what this disease is, here is a link to find out more about it: DMD


I immediately began research on alternative treatments that are SAFE. Steroid treatments are not an option for my son. I will not subject him to all the side effects that come with those treatments since it does not reverse the effects of the disease and really causes more harm than good from what I've seen. In my research I found Dr. Rhodes who practices out of Corpus Christi, Texas. He uses a machine that he calls VECTTOR. Basically it uses electric pulses to help stimulate the nerves in the child's legs, feet, and hands. I have done a lot of research on this doctor and his treatment. It is not FDA approved but their approval really doesn't mean much to me and never has. To give you a little insight into what his treatments are and what his patients are experiencing here is a really great video.


First, here is a video showing a child who is using this treatment. His name is Gabe and he also has DMD, like my son.


And a different boy at 7 with DMD:




You can find all kinds of other videos of different patients on his YouTube Channel under South Texas Innovative Medicine.

There are no harmful side effects from using the VECTTOR machine so my thought is what can it hurt? If it doesn't work then we will continue our search for safe and alternative treatments.

My reason for posting here is I was hoping to get some unbiased opinions. I will admit that having a child with a terminal disease probably does make me more gullible and desperate but I would like to think that I still have a pretty strong mind. I'm not one to believe hype and I'm a pretty pessimistic person. For some reason my mind and heart are telling me to try this treatment.

I would appreciate any input you might have.

Follow your heart. Doctors discover cures every day, maybe that's the one, and if you don't put your son's health in risk you have nothing to lose and a lot to win. I send you my best wishes and please keep us posted on the advances of your son if you decide to go on with this or any other treatment. I know its a hard time but miracles do exist. And a little on the side, I recommend you any book written by Elisabeth Kübler-Ross, "The Wheel of Life" is her autobiography, but she has written over 20 books on how to live with and help somebody with a terminal disease. My heart goes out to your family.

if it might work and seems to have no harmful side effects then why not try it, your son would do it for you i'm certain.

lots of great treatments that are not big pharma er um i mean FDA approved that are far better for us than most people know. never forget on top of the worthless FDA it's the Practice of medicine in any event.

Thank you for your input! I just wanted to make sure I wasn't crazy for wanting to try this. Certain members of my family and of course our physician say this guy is a quack and he's just preying on desperate families. I don't see it. His treatment is only $6500. That is for the machine and a weeks worth of visits to make sure we use the machine right. We are then sent home and only have to follow up periodically. Compare that to the price of the Neurologists, geneticists, etc and his cost seems very low for the results he is getting.

reply to post by lindsay1984

Your strength is inspiring. He is lucky to have you as his Mom.

I echo your sentiments regarding the FDA. Their approval means less than nothing to me.
Vecctor looks like a very promising treatment and I hope with all of my heart that it is successful for your son.
Please keep us updated as best you can.

Excuse my cynicism, but your DR. won't recommend it unless big pharma makes a fortune off of it.
IMO

I will keep everyone posted. I'm hoping that it will work but if it doesn't we will keep searching. He is a fighter as well. He is still riding his bike at 7 which I've been told is a pretty amazing thing for a boy with DMD. Keep us in your thoughts! Thank you.

And I've noticed from showing our family doctor these videos that she wouldn't even look at them. She said it wasn't worth getting our hopes up over something that wouldn't work. It makes no sense that she is on the steroid train like nobody's business though. Frustrating, but I am so glad that my parents taught me at a young age to find my own answers.

i hope your son recovers fully.. its a terrible disease.

Originally posted by Neysa
reply to post by lindsay1984

 

Your strength is inspiring. He is lucky to have you as his Mom.

I echo your sentiments regarding the FDA. Their approval means less than nothing to me.
Vecctor looks like a very promising treatment and I hope with all of my heart that it is successful for your son.
Please keep us updated as best you can.

Excuse my cynicism, but your DR. won't recommend it unless big pharma makes a fortune off of it.
IMO

edit on 11-4-2012 by Neysa because: (no reason given)

that is indeed a problem, but one that is run by the AMA whom are just as corrupt as the FDA and big pharma.

in any case i hope the OP and her son will have a long life and many smiles ahead for them.

reply to post by lindsay1984


Like your doctor, I remain skeptical of his treatment regimen. Both positive and negative opinions can be found about him, and his methods remain unproven and non-approved. I would remain cautious as you search for further information about this treatment, and please don't let desperate hopes drive your decisions on how to proceed. Alternative treatment methods for all ailments can sometimes yield positive results, but one must remain vigilant of unscrupulous people peddling magical cures.

Online advice, especially on a site like this where many opinions are often emotionally skewed, is sketchy at best, and I dare not speculate on potential "cures" that your doctor may or may not have addressed. (Especially since your son is receiving treatment from a doctor with his case specifics)

For the record, I am a licensed physician with credentials to practice at Children's Hospital.

My best wishes go out to both of you.

reply to post by ~Vixen~



So how do you feel about steroid treatments? That's the only option i've been given from the specialist we were sent to. Physical therapy and vitamin therapy are also in the works but I can't see injecting him with something as harmful as steroids. I appreciate your advice and as I said before I'm trying not to base my decisions off of my emotions, but I have talked with other parents who are using his machine who are having success so it is hard for me to not drive down there today to buy this machine. To me the proof on these videos and from my conversations with other patients has me pointed in this direction. Negative and positive things can be said about any doctor and steroids don't have the best track record of being safe.

I am here for unbiased opinions so this is in no way a snappy reply. I honestly want to hear your stance on steroid treatments.

My nephew with MD is now 31 years old and shows no signs of slowing down. He became an Eagle Scout and is college educated in computer sciences. He does contract work for Microsoft. He's in a motorized chair and needs 24/7 care, of course, but the point is that one can live a full life.

Originally posted by lindsay1984
reply to post by ~Vixen~

 

So how do you feel about steroid treatments? That's the only option i've been given from the specialist we were sent to. Physical therapy and vitamin therapy are also in the works but I can't see injecting him with something as harmful as steroids. I appreciate your advice and as I said before I'm trying not to base my decisions off of my emotions, but I have talked with other parents who are using his machine who are having success so it is hard for me to not drive down there today to buy this machine. To me the proof on these videos and from my conversations with other patients has me pointed in this direction.

I am here for unbiased opinions so this is in no way a snappy reply. I honestly want to hear your stance on steroid treatments.

Not meaning to give a "cop out" answer, but the only thing I can truly recommend is to discuss your concerns with your doctor. They have all the information and results that are needed to formulate a proper diagnosis, and for me to divulge any advice without full case specific information and examination would be an extreme ethical violation and open me up to huge legal liability factors.

** Any information that follows should be considered general knowledge and not advice **

That being said, steroid treatments can be helpful in preserving your son's vitality, but it's not a cure. Physical therapy is usually prescribed to maintain dexterity and function, but the degree of therapy relies largely on his present state. A licensed therapist would be best suited to assist you with that, and would help to ensure that the appropriate movement and/or exercise regimen is followed. In desperate times parents can (and often do) over do things like exercise and stretching, because we want so badly for our children to be "cured." Over doing it, though, can have serious side effects and negatively impact the overall treatment plan. PLEASE be careful with this in mind.

Originally posted by ~Vixen~

Originally posted by lindsay1984
reply to post by ~Vixen~

 

Not meaning to give a "cop out" answer, but the only thing I can truly recommend is to discuss your concerns with your doctor. They have all the information and results that are needed to formulate a proper diagnosis, and for me to divulge any advice without full case specific information and examination would be an extreme ethical violation and open me up to huge legal liability factors.

** Any information that follows should be considered general knowledge and not advice **

That being said, steroid treatments can be helpful in preserving your son's vitality, but it's not a cure. Physical therapy is usually prescribed to maintain dexterity and function, but the degree of therapy relies largely on his present state. A licensed therapist would be best suited to assist you with that, and would help to ensure that the appropriate movement and/or exercise regimen is followed. In desperate times parents can (and often do) over do things like exercise and stretching, because we want so badly for our children to be "cured." Over doing it, though, can have serious side effects and negatively impact the overall treatment plan. PLEASE be careful with this in mind.

Thank you for your opinions. The reason I wanted to post this here was to get all types of opinions. So thank you.

reply to post by schuyler


I'm so glad that your nephew is living a full life. Thanks for your words of encouragement.

I would like to say that I wish your son the very best. I look forward to hearing up-dates.

reply to post by Night Star


Thank you. I will post about his progress.

Originally posted by lindsay1984
On March 22nd my life was changed forever. My 7 year old son was diagnosed with Duchenne's Muscular Dystrophy. He had been diagnosed earlier in life with Asperger's but we have now determined this was obviously an incorrect diagnoses. For the first two days I was very depressed and didn't know what to do but then I snapped out of it and began educating myself on the disease, what to expect, and any possible treatments. At this point there is no cure for DMD. (If you don't know what this disease is, here is a link to find out more about it: DMD


I immediately began research on alternative treatments that are SAFE. Steroid treatments are not an option for my son. I will not subject him to all the side effects that come with those treatments since it does not reverse the effects of the disease and really causes more harm than good from what I've seen. In my research..

i strongly urge you to visit the vitamin d council website and contact Dr Cannell about this.

also read this:-

www.regenerativenutrition.com...

I urge you also to look into biofeedback and more specifically, neurofeedback. You will be surprised of the ailments and diseased normally seen as purely physical that can be helped if not eliminated with biofeedback and neurofeedback. All solutions today need not come in a capsule despite what countless advs. in magazines, newspapers and TV tells you. Biofeedback and neurofeedback can be done at home with purchased or rental equipment with the aid of a consulting professional.

Thank you for taking the time to make these suggestions. I will definitely read more into these treatments. At this point too much education on different treatments cannot be harmful.

Thank you for taking the time to make these suggestions. I will definitely read more into these treatments. At this point too much education on different treatments cannot be harmful.