Thank you so much for your response about the Juven and Green Tea Extract. I ended up emailing Dr. McCord about adding extra green tea, but at this time he advised against it. He said that laboratory studies have shown at a minor ingredient in Green Tea called ECG (epicatechin gallate) actually works against the other ingredients in Protandim, and against EGCG, the major ingredient. It is so hard to know what to give sometimes. Maybe because Gavin is only 2 1/2 and only weighs 28 pounds.
I must say you have two very adorable kids!!! I am very interested in supplements. Do you see a Natural Path or do you see a doctor that helps decide on supplements and dosages?
I'm sorry I have not gotten back to you sooner. I hope to meet you and Kelvin. We live so close it would be nice to have someone close who is going through the same challenges and will understand. If you are interested in getting together for coffee or a walk let me know. Karen
My Aunt's Hotel is Tradewinds and her bar is J Byrds I believe. The hotel is on Placencia Point and the Bar is also on the end of the Peninnsula just passed where the gas station used to be. I have not been there since Hurricane Iris so I am sure things look a lot different now. Anyway I would like to hear more of Kelvins story and how you are dealing with this new life you have been thust into. I would also like to know more about the supplements you are giving him and why and dosages. I am trying to do some research. Wondering if we should be doing more with my son. Keep in touch. I will appreciated any info and advice you could offer.
My moms family is from Belize city and placencia. We still have property in placencia. My aunt Janice Leslie has a hotel and bar there. The family we had in San Ignacio have passed away. Their last name was Arragon.
I just read about the "sleeve" you use under the night splints and wanted to say "thank you soooooo much". This sounds like the answer to our summer foot sweat problem. My husband and I will go to the medical supply store tonight. Thanks again for sharing!
How are things going. I just got back from conference. It was very good. Maybe you will be able to go next year we would be able to meet. Well my grandmother, Louisa Rivero Romero, asked me to tell you to ask your husband if he is related to some one by the nickname of "Bucky". Well, talk to you again soon.
We are about 7 miles north of the Franklin County line. Did you go to the MDA camp up in Ashley? Both of my sons were there, one as a camper, one as a counselor. My oldest has been going for four years now as a counselor.
Yes I did read somewhere about the correlation between the age when the boys start walking and the wheelchair age. I cannot recall where exactly. I also do not know how accurate these studies are b/c they use data from only a few boys... one thing I could say is that there are cases of boys diagnosed late (at 8-9); they reached all the milestones at the appropriate age and could walk longer. There are a few families on this forum. So it is something there.
We go to see Dr. Mendell every 6 months, at this point our son is so young so they cannot do/see much. We went to Cincinnati in May and Brenda Wong said that he is asymptomatic at this point. We'll go back to see her in 8-10 months. In the meantime will go to Mendell. Hopefully all this helps until they find a real treatment. I hope they find something sooner rather than later!
Yes, utrophin upregulation and losartan hold promise. I hope they can start the trials sooner rather than later. The planning seems to be taking so long. They were supposed to start the trials for both utrophin and losartan in 08 but now they are pushed to 09. Was Kelvin able to run/jump before steroid? It seems to me that he is doing great, a lot better than other boys his age. In fact, they do say that if the boys start walking early the disaese progresses slowly.
Thanks for your message. We live in Columbus. Our son was diagnosed in January 2008 at 3 months. We participated in a voluntary pilot study for newborn screening in the hospital were I delivered last October. We had no idea what DMD is and the pregnancy and delivery were perfect so you can imagine the shock when they called us 3 months later with the positive results. Since then I have a DNA test myself and it looks like I am not a carrier. At first we went to see Dr. Mendell at Columbus Children’s then we went to Dr. Wong as well. We’ll probably continue to go to both of them. Our son is 9 months old now, these are some pictures from last months: http://s217.photobucket.com/albums/cc84/batrun/Baby8m/
For now he is taking only Vit D3 (his levels were low when we saw Dr. Wong) and we plan to start him on CoQ10 and maybe Protandim when he turns 1. He’s so young and I’m not sure how many things we can make him take in the next 1-2 years, probably not that many…
Kelvin looks great, he is so handsome! Both your children are beautiful!
Robert is our first; we just started having children (the plan was to have 2-3) when all this happened. Now, I’m not so sure what the plan is… we hope to have 1-2 more…
My name is also Michelle. I saw that you were in the carrier moms group and I looked at your profile. My mom and all of her family is from Belize. I was so excited to see that. Well, my 5yr old Brogan has DMD and I also have a 21 mo old boy Liam who does not. We live in Arabi Louisiana which is right next door to New Orleans. I look forward to keeping in touch with you. If you'd like you can also email me @
I love your blog on MDA camp visit day. We did our visit to camp last week. My son is 6.5 and the thought of him leaving my side for a day was scary, but once we saw camp I think, How can I deny him this experience? His aunt will most likely volunteer to be his cousenler, she lives in TN, but really wants to come up to do that, so I will feel better having someone that "knows" him with him. He has a full milk allergy and that scares me more than anything when we send him to camp.
You are right, we stay positive every day!