I have not had a potential treatment post for some time now and I debated whether or not to post this as I know the DMD community questions what I am about to post. It is lengthy but very important. Before I move forward, I find it ironic that the University of Florida’s semi new DMD program called ImagineDMD is in the process of starting a trial that addresses EXACTLY what Dr. Rhodes shared with us. The U of F trial addresses the lack of oxygen and blood flow to the muscles of DMD children. Instead of going into detail about their trial, here is the link: http://www.imagingdmd.org/?q=node/100.
Regarding Dr. Rhodes, Traci and I have made a very important decision and this decision leads us Dr. Rhodes in Corpus Christi, Texas. I have been researching this doctor and this procedure for some time now and based on my research and my interviews with other parents that currently utilize this protocol for their DMD children, the results are astounding! This doctor is a podiatrist and has a significant amount of experience with blood and oxygen circulation in the muscles. He has years of experience in research and treatment of other chronic diseases exacerbated by oxidative stress. Initially his research and treatment focused on patients with Reflex Sympathetic Dystrophy Syndrome (also known as CRPS). Eventually his work led him to Diabetes, Parkinson’s Disease, and now with Muscular Dystrophy. He has come to the opinion that oxidative stress is a common link between all of these diseases.
All of these diseases share pathological changes in the body which can be traced directly or indirectly to a lack of oxygen at the cellular level throughout the body. As a Podiatrist, he has been trained to understand pathologies in the feet. In all of these diseases, oxidative stress shows up first and worst in the feet due to the distance from the heart and central nervous system.
Oxidative stress in Muscular Dystrophy patients is apparent by:
They have had a limited number of children utilizing this treatment but many are experiencing good results from the treatment. Subjectively, patients and their caregivers have reported improvements in strength, movement, balance, sleep, breathing and other areas affecting their quality of life. Objectively, they are getting reports from physical therapists of these patients reporting increases in strength, growth of muscle, flexibility and range of motion. He has also had reports of decreased calf measurements. In addition, with VECTTOR treatment (the name of his machine), the parents of the children with DMD uniformly note that their children’s hands and feet are warmer. This is verified and quantified by Temp-Touch evaluation and is certainly suggestive of decreased oxidative stress.
So far, only two blood tests of children with DMD before and immediately after the initial VECTTOR treatment have been obtained. Both tests demonstrated a significant decrease of TNF alpha. There have been two patients who have had CPK levels tested before and after several months of treatment. Both of these children have shown significant decreases. If you recall, CPK is the test they do to determine if a child has DMD. The normal range varies but is usually around 200 or less. Gabe’s was 20,000. Since the exact parameters of these tests are so variable, they are reluctant to say anything other than that, while the results are encouraging, like everything else, they need further evaluation.
All this being said, nothing means more than a direct conversation with the parents. As an example, I spoke to the parent of an 18 year old boy who has not walked since he was 11 years old. Before he started the treatment, he could not MOVE his arms off the wheel chair nor could he lift his head off the wheel chair and they were advised to schedule a tracheotomy. They started the treatments this past August and currently he is shaving his own face, brushing his own teeth, typing on a computer without help, able to move his head in a normal fashion, his urine was dark brown but is now normal color, he is no longer on Miralax for constipation, he is finally off his CPAP machine, his sleep apnea has gone away, he is breathing on his own, and he is GROWING MUSCLE BACK all since August! Most DMD experts say once the muscle is gone, it is gone. His physical therapist is measuring his muscles and they are getting larger plus he is gaining weight. He has gone from an extra small shirt to a medium and has gone up 2 pant sizes as well. They have even ordered a “stander” to help him stand again!!! He now has HOPE again. Some doubters may say false hope but regardless, it is hope. They are now looking at special vans for HIM TO DRIVE HIMSELF! According to all involved, there are no side effects with this protocol which made it a no brainer for us. As an additional positive note, there is a 20 year old in England that has not stood on his own since he was 12 years old and after the treatments, they now have him putting 45% of his body weight on his legs with the help of a “stander”!!!!. The doctor believes he will stand on his own by Christmas!!! I cannot imagine a better present period! Some will argue against our decision to move forward, but I would be curious to get their take on the below quote/article from the University of Florida’s DMD division:
Posted by U of F – Link: http://www.imagingdmd.org/?q=node/100
Sean Forbes, Ph.D., a member of the ImagingDMD team, has received an $180,000 grant from the Muscular Dystrophy Association to study whether a drug that improves muscle blood flow could slow the progression of Duchenne Muscular Dystrophy. “Muscles in children with Duchenne Muscular Dystrophy are missing a key enzyme that normally increases blood flow and oxygen during and following muscle contractions,” said Forbes, a postdoctoral associate in the College of Public Health and Health Professions’ department of physical therapy. “This reduced blood flow puts additional stress on the muscle and may contribute to damage that cannot be adequately repaired. This ultimately leads to reduced strength and loss of function, such as the ability to walk.” This is dated 11/1/2010 on their site.
This is EXACTLY what the parent told me 3 months ago and what Dr. Rhodes told me 2 months ago. He is not using a drug but instead he is using a machine. Those of you that may have had a sports injury may have been hooked up to some electrodes to improve circulation in order speed up the healing process of the hamstring or whatever muscle injury may have occurred. Conceptually this is similar.
Traci is excited, I am thrilled, and all Gabe knows is he is going on an airpwane tribe (misspelling is on purpose for him) to Texbus. We will fly out 12/26 and meet with the clinic all week then fly back with the machine on 12/31. We will do all the protocols in the comfort of our house. This will consist of one 80 minute treatment in the morning and one 80 minute treatment in the evening for the first month alternating upper and lower body. After the first month it is only 80 minutes in the evening. I must admit I was excited but when I saw the article about the University of Florida trial and their definition of DMD and what the lack of Dystrophin does in the body, I am now convinced this doctor is on to something. Especially since the U of F comments are identical to what the clinic and parents shared with me.
As a parent, it is my job to give my child the best chance at life and there are many tough decisions that must be made. I have prayed and prayed about this and believe this is the right thing to do for our journey. I will keep everyone posted as best I can but know this, I refuse to let this horrible disease take my son’s life without a serious fight! The questions from my children are getting tougher to answer but my HOPE is that one day soon I can say we were faced with a horrible horrible disease yet God gave us the strength, knowledge, and courage to defeat it! Gabe - You are my HERO and through God we have HOPE! Gabe’s Daddy
Regarding Dr. Rhodes, Traci and I have made a very important decision and this decision leads us Dr. Rhodes in Corpus Christi, Texas. I have been researching this doctor and this procedure for some time now and based on my research and my interviews with other parents that currently utilize this protocol for their DMD children, the results are astounding! This doctor is a podiatrist and has a significant amount of experience with blood and oxygen circulation in the muscles. He has years of experience in research and treatment of other chronic diseases exacerbated by oxidative stress. Initially his research and treatment focused on patients with Reflex Sympathetic Dystrophy Syndrome (also known as CRPS). Eventually his work led him to Diabetes, Parkinson’s Disease, and now with Muscular Dystrophy. He has come to the opinion that oxidative stress is a common link between all of these diseases.
All of these diseases share pathological changes in the body which can be traced directly or indirectly to a lack of oxygen at the cellular level throughout the body. As a Podiatrist, he has been trained to understand pathologies in the feet. In all of these diseases, oxidative stress shows up first and worst in the feet due to the distance from the heart and central nervous system.
Oxidative stress in Muscular Dystrophy patients is apparent by:
- Diminished skin temperature in the hands and feet, particularly in the fingers and toes
- Increased capillary filling time in the toes
- Diminished circulation in the digital pulp of the toes in the presence of adequate circulation into the foot
- Changes in the bones shown by X-rays
- Diminished nervous system responses
They have had a limited number of children utilizing this treatment but many are experiencing good results from the treatment. Subjectively, patients and their caregivers have reported improvements in strength, movement, balance, sleep, breathing and other areas affecting their quality of life. Objectively, they are getting reports from physical therapists of these patients reporting increases in strength, growth of muscle, flexibility and range of motion. He has also had reports of decreased calf measurements. In addition, with VECTTOR treatment (the name of his machine), the parents of the children with DMD uniformly note that their children’s hands and feet are warmer. This is verified and quantified by Temp-Touch evaluation and is certainly suggestive of decreased oxidative stress.
So far, only two blood tests of children with DMD before and immediately after the initial VECTTOR treatment have been obtained. Both tests demonstrated a significant decrease of TNF alpha. There have been two patients who have had CPK levels tested before and after several months of treatment. Both of these children have shown significant decreases. If you recall, CPK is the test they do to determine if a child has DMD. The normal range varies but is usually around 200 or less. Gabe’s was 20,000. Since the exact parameters of these tests are so variable, they are reluctant to say anything other than that, while the results are encouraging, like everything else, they need further evaluation.
All this being said, nothing means more than a direct conversation with the parents. As an example, I spoke to the parent of an 18 year old boy who has not walked since he was 11 years old. Before he started the treatment, he could not MOVE his arms off the wheel chair nor could he lift his head off the wheel chair and they were advised to schedule a tracheotomy. They started the treatments this past August and currently he is shaving his own face, brushing his own teeth, typing on a computer without help, able to move his head in a normal fashion, his urine was dark brown but is now normal color, he is no longer on Miralax for constipation, he is finally off his CPAP machine, his sleep apnea has gone away, he is breathing on his own, and he is GROWING MUSCLE BACK all since August! Most DMD experts say once the muscle is gone, it is gone. His physical therapist is measuring his muscles and they are getting larger plus he is gaining weight. He has gone from an extra small shirt to a medium and has gone up 2 pant sizes as well. They have even ordered a “stander” to help him stand again!!! He now has HOPE again. Some doubters may say false hope but regardless, it is hope. They are now looking at special vans for HIM TO DRIVE HIMSELF! According to all involved, there are no side effects with this protocol which made it a no brainer for us. As an additional positive note, there is a 20 year old in England that has not stood on his own since he was 12 years old and after the treatments, they now have him putting 45% of his body weight on his legs with the help of a “stander”!!!!. The doctor believes he will stand on his own by Christmas!!! I cannot imagine a better present period! Some will argue against our decision to move forward, but I would be curious to get their take on the below quote/article from the University of Florida’s DMD division:
Posted by U of F – Link: http://www.imagingdmd.org/?q=node/100
Sean Forbes, Ph.D., a member of the ImagingDMD team, has received an $180,000 grant from the Muscular Dystrophy Association to study whether a drug that improves muscle blood flow could slow the progression of Duchenne Muscular Dystrophy. “Muscles in children with Duchenne Muscular Dystrophy are missing a key enzyme that normally increases blood flow and oxygen during and following muscle contractions,” said Forbes, a postdoctoral associate in the College of Public Health and Health Professions’ department of physical therapy. “This reduced blood flow puts additional stress on the muscle and may contribute to damage that cannot be adequately repaired. This ultimately leads to reduced strength and loss of function, such as the ability to walk.” This is dated 11/1/2010 on their site.
This is EXACTLY what the parent told me 3 months ago and what Dr. Rhodes told me 2 months ago. He is not using a drug but instead he is using a machine. Those of you that may have had a sports injury may have been hooked up to some electrodes to improve circulation in order speed up the healing process of the hamstring or whatever muscle injury may have occurred. Conceptually this is similar.
Traci is excited, I am thrilled, and all Gabe knows is he is going on an airpwane tribe (misspelling is on purpose for him) to Texbus. We will fly out 12/26 and meet with the clinic all week then fly back with the machine on 12/31. We will do all the protocols in the comfort of our house. This will consist of one 80 minute treatment in the morning and one 80 minute treatment in the evening for the first month alternating upper and lower body. After the first month it is only 80 minutes in the evening. I must admit I was excited but when I saw the article about the University of Florida trial and their definition of DMD and what the lack of Dystrophin does in the body, I am now convinced this doctor is on to something. Especially since the U of F comments are identical to what the clinic and parents shared with me.
As a parent, it is my job to give my child the best chance at life and there are many tough decisions that must be made. I have prayed and prayed about this and believe this is the right thing to do for our journey. I will keep everyone posted as best I can but know this, I refuse to let this horrible disease take my son’s life without a serious fight! The questions from my children are getting tougher to answer but my HOPE is that one day soon I can say we were faced with a horrible horrible disease yet God gave us the strength, knowledge, and courage to defeat it! Gabe - You are my HERO and through God we have HOPE! Gabe’s Daddy
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