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Permalink Reply by Amy Sienkiewicz on September 27, 2009 at 6:59pm

I checked out the video...this seems really interesting.

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Permalink Reply by JoAnne Powell on September 27, 2009 at 7:47pm

Yea, this is something new that I have never seen and I am very interested in how this all works. He sent me an email with a big write up about it. I am going to attach it here. Anyone that knows anything about this, feel free to comment. I have forwarded this on to my doctor for an opinion as well.

Amy Sienkiewicz said:

I checked out the video...this seems really interesting.

Attachments:

• Muscular dystrophy 2[1] dr rhodes.doc, 185 KB

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Permalink Reply by Julie Gilmore on September 27, 2009 at 11:45pm

Thanks for posting that up JoAnne, it makes for an interesting read - the physiology of what he is discussing is relatively sound (although there have been some tenuous assumptions made) however I find myself asking a couple of questions:

1. The crux of his treatment is an increase in IGF-1. If IGF-1 therapy was so effective in Duchenne (they started researching it long before exon skipping) why is it not offered as a treatment while we wait for a cure?
2. Why are the most of the papers he is quoting so old - did the studies stop for a reason?
3. How is this addressing the dystrophin deficiency and will the isometric contractions caused by his treatment inevitably lead to more severe necrosis down the track?

I don't want to rain on the parade so to speak, but I do know that Dr Wong is certainly no advocate of this treatment. It does however come down to personal choice, and if you feel the benefits outweigh the risks, then what have you got to lose apart from $4,500? We have tried a lot of therapies on our son over the years, and while some appeared to show improvements for short periods of time, others were just literally sucking our bank balance dry. Did they help? I don't know - did they make us feel better because we were DOING something? absolutely.

I think it is suspicious that this has not made the news and he has resorted to raising the hopes of parents via you-tube. It really does sound like snake oil to me, but who knows? I personally am going to take the $4,500 and spend it on a super dooper holiday, because a positive outlook is the best defence our boys have against DMD, and what improves that more than a holiday?

JoAnne Hathcoat said:

Yea, this is something new that I have never seen and I am very interested in how this all works. He sent me an email with a big write up about it. I am going to attach it here. Anyone that knows anything about this, feel free to comment. I have forwarded this on to my doctor for an opinion as well.

Amy Sienkiewicz said:

I checked out the video...this seems really interesting.

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Permalink Reply by Ofelia Marin on September 28, 2009 at 11:05am

I agree with Julie.

Just talking about his references and not looking at his treatment at all I see the papers/studies are quite outdated. I was looking at his summaries about boy's height and bone density... Hmmm, it does not seem a good study to me on so many levels. Only one thing to mention here, they say that the height is close to normal before age 9-10 and then decreases...how many of these boys were on steroids? Of course they do not have normal height if they are on steroids and I do not think it can be similar to their siblings even before 9-10 either. Then, as we know, the bone density in DMD boys is lower even w/o steroids and their findins show contrary.

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Permalink Reply by JoAnne Powell on September 28, 2009 at 11:31am

I totally agree. My questions were, why is this not all over the news and more importantly how is this replacing dystrophi? That was why I posted it. My husband is wanting to run over to TX and give him every dime he wants and I am very hesitant about anything that seems "too good to be true". There are just too many frauds out there praying on parents like us...you know desperate parents willing to do anything it takes. That was why I posted it. I wanted to see if anyone has heard of him before. Dr Rhodes says that he is going to th UK in the next month or two to present this and speak so that it will make the news and mainstream treatment. I just do not see how it is rebuilding muscles as he says without dystrophin.
Thank you for your feedback. I need this stuff to convince my husband that not just anything will work and that money could be better spent else where. Thanks!!

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Permalink Reply by Kristi Koop on September 28, 2009 at 1:09pm

I have seen this in the google alerts that I receive. This is the only other time I have seen anything about it. I am only 2 hours away from Corpus Christi and had thought of going also. When I heard of nothing else it had slipped from my mind.

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Permalink Reply by Keith Van Houten on September 28, 2009 at 9:26pm

Julie Gilmore said:

I personally am going to take the $4,500 and spend it on a super dooper holiday, because a positive outlook is the best defence our boys have against DMD, and what improves that more than a holiday

I like your spirit, Julie. I agree wholeheartedly.

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Permalink Reply by Tanya Fleming on November 11, 2010 at 12:47am

I have made our first appointment with Dr. Rhodes and I will keep you all posted. You can look me up of Face book and watch the progress we make. I will be honest in what I find out. I am doing lots and lots of research on this. I have to do fundraiseing to even get there, so that is what I am up to now. My boys are 17 and 13 now, Joshua (17) has really bad contractors in his legs, arms, and hands. If we could get them to relax, and gain more strength he would be on top of the world. I am very hopeful and nervous at the same time, and Joshua wants to try it, so that is what we are going to do. And if Joshua does it Justin (13) has to do it too. I will get with our doctor here first and get some initial test completed so that he can measure the differences or side effects that he may have, or not have.
I am very excited for this and pray and hope it helps.
Just wanted to share my thoughts.
Tanya

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Permalink Reply by Ofelia Marin on November 11, 2010 at 6:25am

Thank you so much for sharing Tanya. I wish you much luck with the machine.



Tanya Fleming said:

I have made our first appointment with Dr. Rhodes and I will keep you all posted. You can look me up of Face book and watch the progress we make. I will be honest in what I find out. I am doing lots and lots of research on this. I have to do fundraiseing to even get there, so that is what I am up to now. My boys are 17 and 13 now, Joshua (17) has really bad contractors in his legs, arms, and hands. If we could get them to relax, and gain more strength he would be on top of the world. I am very hopeful and nervous at the same time, and Joshua wants to try it, so that is what we are going to do. And if Joshua does it Justin (13) has to do it too. I will get with our doctor here first and get some initial test completed so that he can measure the differences or side effects that he may have, or not have.
I am very excited for this and pray and hope it helps.
Just wanted to share my thoughts.
Tanya

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Permalink Reply by cheryl cliff on November 11, 2010 at 10:30am

There is another, side, issue here with regard to Dr Rhodes (plus past stem cell experiments) and DMD families. And personally I consider it very important. It is our ability to communicate (or not) within the confines of this site as well as fb.

It appears that some in our community have decided to participate with Dr Rhodes's machine but feel the need to sequester themselves from the rest of us out of fear of backlash. Of course nobody is required to be candid or upfront about anything they choose to do in any aspect of their lives. But it is, in my silly opinion, the RIGHT thing to do to come forward and talk about experiences, good or bad, regarding experimental things that cross our paths. To partake a self experimental treatment and remain voiceless about what happens is sad and perhaps, please forgive me here, a bit selfish.

Seems as though parents go the experimental treatment route in order to seek information to determine if something can help their child. Can't blame anyone really for trying something new. But information is useless unless it is shared.

Personally, if I decided to try something new, and couldn't handle what I read as criticism (please understand nobody who has posted here already is shunning anyone, but is simply stating their opinion to which they are entitled) then I would have to question myself...if I can't handle opinions of others how in the world can I be strong enough to handle the disease eating my child's muscles?

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Permalink Reply by Ofelia Marin on November 11, 2010 at 5:15pm

This sounds good Cheryl, but you must have missed the disrespectful attacks on FB against people using it or keeping an open mind about it. Some people THINK they know what it does, what side effects will produce etc. when in fact none of us knows exactly. As with ANY new/experimental treatment there can be long term side effects. This is true for any drug being tested in clinical trials or not, no one knows if they will have certain side effects after long term use. Thankfully some of our boys participate in trials (controlled or not) to advance drugs/treatments for ALL DMD patients. This is a terminal disease after all. Hence I understand people not wanting to come forward. Some of us do not have the time and energy to fight with others in the community. I know I have more important things to do in my life than fighting with people on FB and removing people from my list of friends.

Today is a good day for the community. Some of the boys participating in the Ataluren trial will have access to it again through individual INDs. Things are moving in the right direction for boys who did so much for this community and their gracious families who never complained about giving a TRY to a drug with possible long term side effects in order to advance a possible treatment. They are my heroes!





cheryl cliff said:

There is another, side, issue here with regard to Dr Rhodes (plus past stem cell experiments) and DMD families. And personally I consider it very important. It is our ability to communicate (or not) within the confines of this site as well as fb.

It appears that some in our community have decided to participate with Dr Rhodes's machine but feel the need to sequester themselves from the rest of us out of fear of backlash. Of course nobody is required to be candid or upfront about anything they choose to do in any aspect of their lives. But it is, in my silly opinion, the RIGHT thing to do to come forward and talk about experiences, good or bad, regarding experimental things that cross our paths. To partake a self experimental treatment and remain voiceless about what happens is sad and perhaps, please forgive me here, a bit selfish.

Seems as though parents go the experimental treatment route in order to seek information to determine if something can help their child. Can't blame anyone really for trying something new. But information is useless unless it is shared.

Personally, if I decided to try something new, and couldn't handle what I read as criticism (please understand nobody who has posted here already is shunning anyone, but is simply stating their opinion to which they are entitled) then I would have to question myself...if I can't handle opinions of others how in the world can I be strong enough to handle the disease eating my child's muscles?

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Permalink Reply by cheryl cliff on November 11, 2010 at 7:16pm

Couldn't agree with you more Ofelia. And yes, I missed the entire fb nonsense that must've taken place earlier or who knows when. Personally I think anyone that wants to take on an experimental treatment I am 100% for! Nobody asked my opinion, which is fine. Yet I, among others, have been subjected to name calling and cut off. This isn't rational behavior.

Just as you, I am NOT here to fight and have many, many better uses of time. Instead I was hoping to continue dialog in order to help remedy a stupid situation. So although this issue has nothing to do with me personally, what I see bothers me because it continues to splinter an already tiny group of people who need to stay connected to benefit all our guys.

Like I said, information is useless unless it is shared. Sharing has nothing to do with name calling & 'offing others.

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