Updates/Accomplishments for 2013

A little update, sorry I’ve been neglectful to this blog.  I promise to do better on the updates.  Levi is doing well.  He is still declining from the DMD but I believe if we weren’t doing the treatments that we are, he wouldn’t be walking at all. His regimen for supplements are: Selenium, Vitamin E, Buffalo Liver (range fed, freeze dried) liquid calcium magnesium, black cherry juice, probiotic and essential electrolytes. He also gets his Vecttor treatments every day, twice a day.  Before we started the Vecttor, Levi was declining fast. It really came on all the sudden and was full force. Over the last year and a half since starting Vecttor, Levi has gained back some abilities such as riding a bike, jumping off the ground (not a huge jump, but he gets off the ground without falling), his walk is faster and he actually tries to run all the time. It’s not a full force run like you would expect from a normal 9 year old boy, but he gets around really great. He sleeps so much better, no more bloodshot eyes, calves have decreased in size and are soft to the touch. He’s doing better in school, his behavior is better and his heart and lungs are perfect at this time.  He did lose some abilities over the last year. He can no longer get up out of the floor using gower’s maneuver.  He has to pull himself up on a chair or we assist him.  Steps are becoming harder for him to navigate, but he still does it, every time. I try to help him and he let’s me know he can do it on his own. We own a manual wheelchair but he never uses it unless we are going somewhere that requires walking long distances.  He can still walk through the grocery store or Target without assistance from a wheelchair.  He really is in great shape for what this disease is throwing at him.  His appetite is great.  He eats a gluten-free diet and we try to avoid dairy milk and cheese.  We avoid fried foods and carbonated drinks and try to only eat red meat a couple of times a month.  Levi has adjusted to his diet very well and let me tell you, I didn’t think it was gonna be an easy sell.  He was a fast food kid.  He knew all the slogans and what he liked from each place, most of you know what I mean.   We changed to organic foods and only eating at restaurants if necessary and avoid GMO’s and he doesn’t complain at all.  After a couple of weeks he even started to say that he hated places like McDonald’s.  It’s a great feeling to jump into something thinking it’s gonna be a disaster and it ends up being something that works out great.  He really surprised me by being open to the new foods we were eating and I think he found that he felt better eating those things. Our kids are much more intuitive than what we give them credit for sometimes.  Overall, he is doing good.  I still see him struggle with things that used to be easy or manageable and now he’s lost the ability to do those things, but overall he has gained abilities or has maintained them and he still gets to be mobile and experience life without being dragged down by the side effects of harsh drugs.  He still does not take steroids and that is still something I stand firm on.  I don’t want to complicate his body with chemicals when natural supplements are working just as well to keep him healthy without the awful side effects present in most cases.  I’ve kept him mobile for another year and a half and that is a lot of time bought. I may not have the scientific data to support my claim but that’s why I created this blog.  So that I could share our life with any other parents looking for alternative treatments.  There are a lot of mom’s and dad’s just like me out there that just want to give a better quality life than the life that the doctors are offering.  When I hug my son every night I know in my heart that I’m doing the most in my power to save him. I will not sit around and wait on scientists to save my son. They don’t see him every day, they don’t fight like I do.  I can research and I can ask all the doctors on my son’s team their advice and cautions and I can then weigh the pros and cons and help them develop a treatment plan that works for HIM. Not an across the board ‘treatment’ that only makes things better for a little bit but worse in the long term.  I will continue to post updates on Levi’s accomplishments and how wonderful he is.  Thank you to those that have read and commented.  I hope that this blog might help you start your own research on a treatment plan that works to help alleviate symptoms, not make them worse by compounding the situation.  We are looking forward to 2014 and hope to continue to see Levi thrive and battle this disease with hope and determination.

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2 thoughts on “Updates/Accomplishments for 2013

  1. Dear Lindsay
    I just wanted to say thank you for your courage in sharing your experiences of treating DMD alternatively.
    My 2 year old was diagnosed earlier this year and I’ve been working hard at creating a natural regimen for him that will keep him as healthy as possible for as long as possible. Your blog has provided really helpful information as well as being inspiring.
    Wishing you, Levi and the rest of your family the very best,
    Chris
    p.s. I have just come across another possible useful supplement called L-carnitine and found this paper online: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3507830/
    Is this a supplement that you use or have considered?

    • I will check out that information. Thanks for passing it along. Glad to hear you are exploring alternative treatments for your son as well. If you have any other questions about Levi feel free to ask.

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