You can stay with us. No problem. Please contact me by email since I don't come here very often. Here is my email: firstname.lastname@example.org. But again, I confirm our availability and we would love to have you in our house.
I am responding to your comments regarding Ryan's treatments in Costa Rica. I am Ryan's Stepfather and would like to turn your skepticism into optimism. I am sorry that your son has DMD, but I can assure you that there is more than just hope on the horizon.
Ryan was selected for this research treatment, because of our personal relationship the Neil (Dr. Riordan). He has known Ryan's mom and dad since high school and has known Ryan since he was born. Ryan was diagnosed with DMD in 1989 and over the years, Neil has researched numerous treatments that might help him. When he contacted us in Jan of last year, we were very excited. His motivation for helping Ryan was as a friend and not to gain fame, as one blogger noted.
His clinic in Costa Rica – Institute of Cellular Medicine ICM www.cellmedicine.com – has been treating various diseases, since it opened in 2006 and a new clinic recently opened in Panama. They primarily have worked with MS patients, but have also worked with many others. He does not utilize any immune suppression techniques and only works with adult stem cells.
We knew going in that based on all the success he has had with other diseases that the worst thing that could happen would be that Ryan would remain at his current state. Fortunately, Ryan has excelled beyond our highest expectations. When we received the results from the biopsy in Jan, it was one of the most emotional days I have ever experienced. We waited to go public until Ryan's case study was published, which happened about a month ago in the Cellular Immunology medical journal.
Ryan is getting stronger and is hoping that the research gained from his study will allow others to reap the same benefits. His hope is for a 30 year old person to hear something about DMD and say “I think that is what I had when I was a boy”. Ryan's has been in a wheelchair for almost 12 years and his muscles are very weak, due to the lack of activity. The physical therapy he endures at least three times a week is a slow process, in order to reactivate the dormant muscles. The good thing is that they are getting stronger.
We are hesitant to post our comments on Pat's blog for two reasons. First, we are not quite ready to field the flurry of requests we know we will receive. The second is that we do not want to interrupt any conversations with Pat and Neil. This is why I responded to you personally. Pat is just one of hundreds of requests from around the world that Neil is responding to.
Keep the faith; hope is rapidly fading into the reality of success for those with DMD.
Michelle, you can stay with me. No problem. Call me: (513) 7659416. I think you already have my address. Better to contact me through my diirect email since I am having problems with internet: email@example.com. Have a safe trip.
Michelle, Thanks for your answer about Kelvin. I was just trying to compare him with Robert. At 22 mths he cannot run well, it is more like a very fast walk. He also uses hands when standing up from the floor and cannot jump at this point.
Hi Michelle. Our sons are about the same age and were diagnosed about the same time. My Jordan was diagnosed in June 08 with a deletion of 8-11. I have also been told by Dr.s at CHOP that this deletion sometimes follows a more "mild" progression. I just continue to pray. My son seems to be doing well, even though I don't really have anything to compare it to. I was also praying that he might be called a becker's, although his CPK (when tested for the first time in April 09) was 20,300. This sort of dashed my hopes. We don't go to Cinn. until Feb. In the meantime, I am trying to start him on Juven, but am waiting for grape flavor to arrive, as he didn't like orange. Of course the rest of us tasted it and thought it was great. I am hoping that once he has been on the Juven for 3 mths or so I can introdce protandim.
In any case, would you mind sharing what Dr. Wong about cpk and muscle biopsy. I am not putting my son through it unless she recommends it. Also, would you mind telling me how Kelvin came to be diagnosed? Jordan uses a modified gowers, but I put him in PT for bouncing on his toes in Feb 08, and it was the PT who recognized the other weakness.
Sorry for the long post, but thanks for any info you are willing to share.
Hello Michelle We been in cinc last week everything was great,Dr Wong and her group were more than perfect We been answered about many questions.
Me and my family loved the area,since it's our first time,I been thinking to establish in a rural area close to cinc.I want a favor,can you please give me your e-mail for more details,I appreciate your help.Thank you.
Hi Michelle! My son is nine and this will be his first year going to camp so there is always next year. I am a little nervous about it but i feel like it's time for Cody to meet some kids his age that are dealing with the same thing.
Thanks for writting. I am running... so little time to do so many things... ! but need the work!... I would love to see you in August. ! Just let me know when ever you have your plans ready. Are you going to the PPMD Conference?
I am sorry to hear about the risk on your husband's work... I am feeling at risk as well but we need to do everything we can to hang in there.
I know it can be frustrating when you offer the best and people don't react possibility but you are doing the right thing and we all need to accept the differences in personal thoughts and believes... but it is a great thing what you do about offering information!.
We pray always as well for Kelvin and the little boys we know... we need those prays so much!! Keep your heart up!
My son Ryan is going to turn 7 in july.He is also very active like Kevin. We found out on october 25, 2008. Ryan has a deletion of 48-50. Ryan is taking delazacort, protandium, green tea extract, haelan, Multi vits, Coq 10, cal + vit D3,and also drinks a packet a day of Juven. We are going to start Noni juice soon. I wanted to know what time of the day do you give Noni and is it given empty stomach or after food. Have a great day!
The NONI site that you posted about, is that where you get your supply? Just curious b/c I was considering starting Cade on it. How much does your son weigh? Cade and Kelvin are about the same age so I was just going to start him out at 1/2 ounce. I went to GNC and they had NONI juice, but it is only 10,000mg not 30,000. Just wondered if it is the same thing or not. Thank YOu!!
thank you so much for your response, im going to talk over your information and do some research with my husband. i believe suppliments can help delay prgress, we also feed our boys well, very well by todays standards, and keep them active. they do okay, but im worried about asutin lately, he's 10 and falling a lot more often, i see hime losing his ability to walk soon, also he is so moody. anyway, keep in touch, jenn
I just came upon one of your postings on bone density, and wanted to see if you could offer any info or advice. My son just turned 7 in January. He was diagnosed with 8-11 deletion in June. Like Kelvin, the Drs. keep saying "we'd like to say he's a becker's, but he's DMD on paper. We are also not doing a biopsy at this point.
Today I found out that my son's dexascan, taken 8 weeks prior to starting steroids, gave him a z score of -3.2. I am so mad that the hospital messed up and no Dr. ever got results. I found out on accident.
Our sons also seem to have a similarity in that they are both very small. Jordan is only in the 3rd percentile for height and weight, and has been for the last year or so. He's only been on deflazacorte for 3 months.
Do you know if there is an explanation for low bone denisity prior to steroids. His symptoms are very mild and he has always been active. We only noticed an issue when I realized he was having trouble with the stairs. So, I don't know what to think. Any of your thoughts would be greatly appreciated.
Also, I was planning on starting Juven this month. I was going to try that for 3 months and then introduce the protandim. Does Kelvin take Juven?
Thanks for letting me vent!
i stumbled on your page, and am very interested in the suppliments you are using. we have a 10 year old and 7 year old with duchennes... they both have a deletion. the oldest boy, austin, has been having symptoms since age 2 or earlier, he is still walking but not much. our younger son max has no symptoms yet, except he gets tired easily. he still hikes, jumps with both feet, has no trouble getting off the floor etc. i find myself wondering if there is more to this, as both boys have the same deletion... please would you tell me more about the syppliments you use and why? we did try creatine some years ago, but saw no change in austin. both boys have learning disabilities and are on IEPs at school as well, but they both test very high when it comes to higher level reasoning skills.
like you, we are putting in an indoor pool, its small but will be heated to theraputic temperatures for our boys. thanks for sharing your info in such detail, jenn
Hope all is going well with your family and Kelvin. As you know Neel has a deletion 45-52, same as Kelvin's. Last week I took Neel to his first MDA clinic appt. I was really impressed with the professionalism and concern that we received. They were awesome! The appt was long and informative. However during the appt we learned that the doc thought that Neel's dmd was progressing faster than he would expect for a 2 year old and that from the signs of weakness he saw in Neel he would say that his md was more on the severe side. Definately not what one wants to hear. So we've had a tough weak and have hit the computers again. There's only one question I have, "WHY" and there's only one person that can answer it, God. Someday hopefully I will have the answer but until then definately no comfort. Sorry to downpour on you totally not my intention when I started this. Hope you and your family are doing well, keep in touch. Kulwant
First of all Happy Birthday to Kelvin! I admire your kind words and will defintely keep in touch with you about Neel. He turned two last month and we found out about his MD a day before his birthday party. I think the hardest thing a person has to bear in life is the news that there is something wrong with their child. And the second hardest knowing that there is no cure. But our boys are stronger than we think and so full of life. Have faith. Best birthday wishes to Kelvin.
We did not talk in a while. I hope everything is going well. I was wondering if you attended the support group when Dr Mendell presented. What exactly did he say? Any good results in his research? Any upcoming trials?