The picture here is of Kelvin and 2 other Duchenne boys, Danny and Carter, which many of you know. This was at our first Cincinnati visit, in 2008. Aren't they beautiful boys!
When we found out that Kelvin had Duchenne, 3 years ago, we started the journey that many folks do or will have to do. There are so many decisions to make, let alone the emotions that you are going through. My family, friends, parents and I spent thousands of hours researching online to find out what we could do for our son. I am hopeful that some "new" folks to DMD will read this and it may help others. At first, we were told nothing, but, I wasn't going to stop at "nothing". I knew there had to be something that could help Kelvin. In fact, I have found that there are things that can be done to help our boys stay better longer. At this time, that is all that we have. There is no treatment and no cure and according to some doctors, it may be many years yet until treatments can be provided to our sons, even though there are many in clinical phases. Until then, I'll soon describe what we found to work for us, for now. Our son has exon deletions of 45-52 and I've found that every child with Duchenne is different in how they progress. During our research, we read many clinical trial findings, found out what top doctors said they'd give their children if their child had Duchenne, asked other parents and other things, we are on our own. Kelvin is doing well for age 8, he'll be 9 in Sept. The doctors continually tell us to keep doing what we are doing, because Kelvin is doing so well. Again, partly due to his specific deletions (which are ones that normally have a slower progression-according to his doctors), and partly due (we think) to what we are doing (we hope). I'll list what we do/give to Kelvin and then I'll explain what a few items have done (in my opinion). First, a list of supplements: 1 TBSP of Liquid Life Complete Nutrition-liquid vitamin, 1 D-2000 Nature's Bounty D3-recommended by Doctor, 1 Adora Calcium Supplement -500mg, 5 Gram Glutamine + 2.5 Gram Creatine - unflavored mixed with a drink mix/H2O, 1 Protandim, 157 mg of Green Tea Extract, 2 tsp of Lifetime Liquid Calcium Magnesium Citrate, 2 tsp of Qunol Liquid CoQ10, 1 drop nightly of Carlson Ddrops vitamin D3 1000 IU, 1 tsp of Barleans Kid's DHA-Omega 3,6,9, 1 tbsp of Noni Juice mixed with rootbeer. Second: takes 15 mg of Deflazacort per day (has been on same dose for 3 years) which is a 1/2 pill put in Gogurt. Third: Kelvin is massaged/stretched at least 6 times per week at night after he falls asleep (works for us). He wears night splints on his hands (rotated between hands-1 day on right, 1 on left), and night splints on his legs, after being massaged and stretched. Fourth: We use a special stroller for long distances (not yet because he needs it always, but, because we make him-it is about conservation of his muscles). We always keep him from doing too much. Not too much walking, climbing, running, etc. He does everything, but, we have a stopping point for everything Kelvin does. He doesn't always like it, but, we are trying the best we can to prolong his walking.
Explanations: I'll explain a few items. Noni Juice, our amazing juice. For a real life testimony, go to http://www.trunoni.com/ and I've posted a testimony there. I think this is making a real difference for Kelvin. When he started to take 100% Noni Juice, immediately, he could breathe so well, it was really incredible. For the first 5 years of his life, he always had problems with snoring, respiratory infections, etc. Instantly, he was better and for 3 years now, his breathing is perfect. He had never slept with his mouth shut, prior to taking Noni, and for 3 years, he has only slept with it opened a few times when he had a bad cold. It tastes terrible, but, he drinks the 1 TBSP mixed in 4 oz rootbeer and tolerates it well (he won't even take his other supplements without it. Please, please read up on Noni online. It is hitting the world and other nations too, especially Hawaii, Central American, Tahiti, etc. It is an amazing fruit. Many folks say it helps with Asthma. I am no doctor, but, it did something amazing to Kelvin, so, maybe it does. My friend just saw it in another country while on a cruise. It is selling everywhere in Belize, Central America too.
Protandim - this was amazing to us, just like Noni. I never really believed in supplements, until Noni and Protandim. Oh, and by the way, I added each new supplement, weeks apart, so I could see what might not work for him, as if you start many all together, then you might now be able to see what is helping/hurting. Ok, Protandim, Kelvin changed so quickly, congnitive wise, when we gave Protandim. He hadn't been able to use a computer or mouse at all (he was 5). He kept getting very frustrated. We didn't know how to help him. Our daughter had been using the computer extensively by age 2, so, we didn't know what to do. He started taking Protandim and not only could instantly use the computer and mouse, but, could play difficult computer games like Zoo Tycoon. Also, he hadn't been able to use his sister's Nintendo DS, but again, instantly he could, I'm talking overnight. It was amazing. My entire family was witness to this. Kelvin does struggle in school, but, I'm not sure where he would be without Protandim. Kelvin has never had tight calf muscles, so, as many people find, I didn't really notice a difference in softness of his calves.
Vitamin D:
We give multiple sources of Vitamin D, but, Kelvin's vitamin D in his blood and his bone density improved in a 12 month period, not sure why, but, according to his doctor, they highly recommend Nature's Bounty D-2000 Vitamin D3. I realize it is cheap, but, after review of many children and what brand they were on, Kelvin's doctor found that boys do well on this brand specifically. I guess they were right, maybe, as after changing to this brand, Kelvin improved, HOWEVER, we added 1 drop of Carlson Ddrops vitamin D3 1000 IU also, so, not sure what did it, but, I'm sticking with what I'm doing, after seeing an improvement. We were moving towards Fosomax, but, didn't need to after improving a bit, at least not for now.
We feel very strong about what we give Kelvin, his doctors approve as well. Just like others, the decision to use steroids/Deflazacort was a difficult one, knowing the risks. Kelvin's height is now below the growth chart, but, I'm read multiple times where being shorter, may be better than elongated muscles, so, for now, we are dealing with it and sticking with it and have decided against growth hormone at the time (again, due to reading/researching that being shorter may actually be better). I have also read situations where the growth hormone may be beneficial as well. Wow, too many decisions! Again, these are decisions that are all difficult to make and many times are left up to the parents.
Speaking of doctors, that was another decision we made. We go to Cincinnati Children's once a year and also to Nationwide Children's in Columbus, as Cincinnati is a Comprehensive Care Center and Nationwide was not. It has been a very good choice for us, but, we are lucky enough to be in Ohio and have some of the best doctors here, both at Cincinnati and at Nationwide.
My hope is to continue to work together; both helping to educate one another and to educate others so that together we can gain resources (doctors, money, etc.) necessary to CURE DUCHENNE. If anyone has any questions about anything I posted here, I'd be glad to help, if I can. Oh, and I quickly write these, so, I apologize for spelling and grammatical errors. Also, my opinion about the supplements is my own and I'm not paid nor do I benefit from promoting them. It is only my opinion.
