Dear Tammy,

My son Arthur was recently diagnosed with DMD. I am very interested in your supplement discussion.  Are you concerned about side effects of steroids and other medications? I live in south jersey we live very close and I'd love to talk with you. 

stacey davis

Hi Tammy,

Your boys are beautiful =)  I hope you are finding the answers you need, PPMD is a great place for that.

"Have you had any success with the amino acid supplements you are giving your son?"

Dear Tammy it is very difficult to evaluate the success or not of the amino acids supplements. But at least now I know tat he has normal levels of these amino acids, but the other amino acids that I dont supplement are not in the normal level. By now I dont know if this is due to DMD or not.  

Im so sorry to hear about ur little boys i know u are tired of hearing poeple say they understand and they don't have a clue. My son was diagnosed about 3 years ago when he was 4. I had never heard of dmd but now its my life. We went thru not knowing to being fully involved with the mda. As far as vitamins go my son is on vitamin d, predisone. You will have to see cardiologist, endocrologist, and nuerologist. If yoi are anything like i was u are thinking cant i just up his protein in his diet well that doesnt work i have looked into clinical trails to. If you have any questions just ask.

Tammy--

I'm so glad you contacted me!  I am so sorry for what you are going through.  You live so close by us, though.  Please call me anytime.  my number is 302-438-7734.  Also, there is another family right outside of West Chester that we have gotten very close to through this horrible disease!

My son is doing very well, all things considered.  He has declined most definitely over the last 4 years, but is still much better than the doctors would have expected him to be.  He takes the Juven as consistently as I can make him.  At last check (in Feb), his CK was back down to 8600.  It was 21000 in march 2010 when it was checked by Dr. Wong.  At that point though, he wasn't taking it consistently.  As he was still on GH, I attribute the decline to the Juven.  He hasn't been on protandim, but after reading about it again, I am going to get it for him.

As for CHOP, we have taken Jordan both there, and to Cinci.  As you may have heard, Dr. Finkel has left CHOP and moved to Orlando.  We saw Dr. Tennekon at CHOP on friday.  We had seen him once before when Jordan was first diagnosed.  I was impressed with him last week.  He is optimistic about the status of the medicine and seemed willing to be very proactive for us.  He offered to do extensive follow-up with regard to a clinical trial that is going on, so I will see how that goes.  If we are unsatisfied we will go back to Cinci.  However, living here, you could go to Boston to Brian Tseng (who is wonderful), or baltimore to Katherine Wagner, who I don't know but I believe the family in WC is going to see for their next appointment.  They have 2 boys with DMD, ages 6 & 8.

Please call me-- it might be better to talk about some of this stuff than to go through email.

Regina 

Tammy, I just realized that the earlier post I sent got cut off somehow.  I just wanted to give you my phone number 208-220-1796 and tell you to please call me anytime with any questions about Duchenne, Protandim, or anything at all, or just to talk.  I know what you are all going through, and my heart is breaking for you.  I became a distributor last October, so if you decide to start TJ on Protandim I can order it for you if you would like.

Have a great Easter!

Marla

Hi Tammy,

Thank you for your comment =)  It breaks my heart to know what you all are going through right now, but this community was a life saver for me nearly six years ago. Wow, I can't believe its been that long ago since Baylor's diagnosis.  Baylor had always struggled with stairs, and didn't walk until he was 19 months old, so at his 2 year check- up in May 2006, I asked for a CK (Creatine Kinase) level to be done.  When the doctor called me personally one week later, I knew before the words even came out of his mouth.  It is like being punched hard in the stomach and feeling like your heart is getting ripped out all in one terrible moment.  I'm so sorry sweetie =(  So Baylor at TJ's age  was having terrible cramps in his calves.  If he played vigorously for too long he was up all night with charley horses.  I worried about giving him ibuprofen, but if I didn't he or I didn't get any sleep. I didn't know what to do.  In Fall 2006 at that time there was a group of people on PPMD that were very knowledgeable about Duchenne, (there still are, just different people =)  as their boys were older and they had been been researching supplements for a while.  I came across several conversations about a product called Protandim.  It was working for their son's because it was an anti-inflammatory and an anti-fibrotic.  Harvard University did a study on Duchenne and Protandim which I located and read, and I decided at that moment that this was something I would try for Baylor.  Baylor was so young, so I got the number of the doctor who formulated it, Dr. Joe McCord who is a Professor of critical and pulmonary care at the University of Colorado=Denver, and a world renown scientist known for his work on cellular free radical science.  He told me at that time that Baylor was the youngest to his knowledge to ever be on Protandim and told me to give him 1/2 tablet a day, and too let him know how he did on it.  We had to split the tablet, crush it, and give it to Baylor in food (some people use chocolate syrup) or mixed with juice or water in a medicine syringe.  Needless to say, it doesn't taste like candy, so with Baylor and his sensory/autism issues it was like pulling teeth to get it into him, but we did, and we are so grateful we started him on it at that time.  Within a week he was no longer having the muscle cramps or charley horses in his calves, and when he woke up in the morning, his calves were soft and felt normal, instead of hard masses.  One of the other things we noticed was that he was much more flexible to stretch after he started Protandim. We took him off of it for a couple of years, and I regret that now so much.  We got him back on it in October 2011, (he's 7 now, so we taught him to swallow it) and the difference we saw in him was amazing.  He had started falling so often, and was on the ground more than on his feet.  His aides at school were as alarmed as we were at this new stage of Duchenne.  I was re-introduced to Protandim last October (funny, because I still had 2 bottles left over) and learned more about the science and the new science I had no idea about.  To make a long story shorter, Baylor again within a short time, showed great improvement.  He went from falling 90% of the time, back to falling 10 % of the time.  In fact, both of his aides remarked on the difference. 

Protandim is a great supplement for Duchenne boys, to give them a better quality of life.  I don't know about it helping with strength at this point with Baylor, but just the fact that he falls less and stretches easier is huge. To learn more about Protandim, I suggest you watch a video on the internet.  This video is of an ABC Primetime segment done by John Quionnes on Protandim back in 2005.  He went in to debunk it, and came out a believer.  He and his family still take Protandim to this day go to www.abcliveit.com to watch it.  You also need to go to www.pubmed.gov   this is the website for the National Library of Medici