Jumping On The Bandwagon

Thursday I will receive a shipment from Youngevity for the Defying MD Package.  Dr. Wallach and Todd Harrison have peaked my interest with their protocol and results.  So much so that I am starting my son on this protocol. We have been supplementing with Selenium and Vitamin E already for about 9 months and have been on a gluten free diet off and on.  We have seen results that I am happy with but I still feel he is declining. I also KNOW that it’s because I haven’t been doing the diet 100% and I haven’t added some of the extra supplements that were included in Todd’s protocol.  The main reason was a money issue. It’s taken us some time to save up to buy the supplements but now that we are in a place where we can afford it I am making it a priority.  We are a one income family so spending extra money is hard to do.  I’ve had to make cuts where I can but no more will I make cuts to any of our food or supplements.  I’ve done tons of research about Selenium and the other supplements he will be taking. I’ve talked with his physicians and even though they don’t agree that this will work, they agree that there will be no harm from trying.  I heard the same things before we tried the Vecttor and I still am so glad that we decided to purchase it.  I believe it has helped him stay mobile these last two years.

Duchenne is a fast moving monster, though, and the Vecttor doesn’t seem to be enough for our arsenal at this point.  That put me into Momma Bear mode and I decided to finally go with what my gut has been telling me for months now.  The little changes I have made so far have made pretty big strides for Levi’s stability.  That leads me to believe that if I add more nutrients and follow the diet plan strictly we will see even bigger improvements.

My goal for this trial is not to get my hopes up and not to guarantee myself it’s going to cure Levi.  Every parent of a child with DMD understands when I say that there is no easy answer on the care of our children.  We have to know so much information, we have to double check everything, we have to make sure that what we are putting into our children is only helping them and not causing other things to go wrong.  Nutrition is the best remedy for any ailment. Nature knows what it is doing. I don’t know if you believe in a god or if you’re spiritual, but I believe that everything put on this Earth is here for our benefit.   I don’t know if this is the right thing to do, but my gut is telling me it is.

I will be documenting any and all improvements Levi makes. I will be having his CK levels monitored and we will do a 6 minute walk test every month.  His diet will be as follows:

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I hope this will help some of you that are on the fence about trying Youngevity for yourself or your child.  Good or bad results will be posted.  I’m not gonna church it up if it’s not working.  I want this to work very badly, but I will not be candy coating anything. I want this to be as unbiased as it can be for a personally run trial.  I know it won’t have scientific hold like some of you want but if this is something that can help I want it to be known by every person affected by DMD.

I hope you’ll follow my blog to see how Levi does while on the Defying MD protocol. We are excited and hope to have the same results as some of the others that have used this protocol.

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Update for 2014…Goals…Wishes…Hopes :)

So, 2014 really caught me by surprise.  I swear that I blinked and missed 2013.  I have to admit that I was in a funk at the end of 2013.  We are down to a one income family so that I can stay home with the kids and be super mom.  It’s been so great for us as a family unit but it has put such a strain on the pocketbook.   Even with that, though, we made it work and we are still chugging along.  I slacked off on our diet the past few weeks and I’m really upset with myself that I’ve let my emotional state get to a point where its effecting what’s going on in our house.  That’s why I’m starting over and holding myself accountable by setting goals that work for our family.  We are all gonna get back on the healthy train and stay there because getting off is not an option.

Here’s what I’ve learned in the first two years since my son’s diagnoses.  IT IS NOT EASY but you HAVE to take care of yourself, too.  

I am telling you mom’s and dad’s…if you don’t take care of your own health, mental and physical, you will never get through this. When you are emotionally drained, your kids aren’t getting the full version of you.  Work out, take a bath, play some music…whatever your outlet it, make sure you get it once a day.  Cutting yourself short doesn’t help anyone. 

Eat healthy!!! I cannot stress this one ENOUGH.  IF you aren’t giving your family the proper nutrition then everyone is not going to be at their full potential. 

Make time for family time. If you already do tons of stuff together, great. Do more! 🙂 Your kids will thank you for it. 

We are going to get back into the swing of things and I’m am going to start video documenting Levi’s progress from here on out.  2013 was a big year for us and I know 2014 will be even bigger. Levi is still fully ambulatory only from using the Vecttor, supplements, and diet changes.  I am gonna stick to all of this full force and video documenting will help me hold myself accountable.  I hope you can make some goals for your family and make the changes you need to see your life for what it really is. PRICELESS. Image

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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Selenium and Vitamin E…more arsenal for the war against DMD?

I have to say that Todd Harrison from Defying Muscular Dystrophy has opened my eyes to an interesting supplement called Selenium.  Todd has Becker’s MD and has been using the VECTTOR for some time now but he just recently started taking a few other supplements including Selenium and Vitamin E.  In his posts on Facebook he has been updating us all on how much better he is doing after only being on this new regimen a few weeks.  These updates have made me jump into research mode.  Here’s what I’ve found and it’s a VERY interesting read.

What is Selenium? 

Selenium is a trace mineral that is essential to good health but required only in small amounts. Selenium is incorporated into proteins to make selenoproteins, which are important antioxidant enzymes. The antioxidant properties of selenoproteins help prevent cellular damage from free radicals. Free radicals are natural by-products of oxygen metabolism that may contribute to the development of chronic diseases such as cancer and heart disease. Other selenoproteins help regulate thyroid function and play a role in the immune system. *(source)*

Selenium is in the soil.  The plants grown from the ground have it because of the soil, the animals have it because it’s in the soil, and we eat the animals and plants. Sounds like we shouldn’t be deficient?

What if the soil is deficient?

Do you and your family get enough greens?

Think of all the processed foods you eat that aren’t enriched with natural elements like Selenium.  How can we be sure we aren’t deficient in these vitamins?  Even worse, are our children deficient?  I was trying to think back to the last time the doctor has run a full blood panel on my son and he has never had that done.  I wonder what he is deficient in as far as his vitamin levels.

I hope you are still with me. This is going to seem long winded but I promise there is some intriguing info here. 

I started doing some research on muscular dystrophy in animals (specifically livestock and horses) and I’ve found some exciting things.  MD is most commonly called White Muscle Disease in animals.

Here’s a snippet from an article with some great info:

“Oregon State University researchers made a significant discovery in 1958. They found that the underlying cause of white muscle disease is a dietary deficiency of the trace element selenium (Se). There is a fairly clear-cut relationship between soil, plant, and animal factors.” *(Source)*

So, in 1958 researchers found the UNDERLYING cause of White Muscle Disease (or muscular dystrophy) and they then found out they could essentially CURE it by supplementing the animals diet with the right amount of Selenium.

You may be saying, “These are horses, not people. What does this have to do with Duchenne or any other form of MD?”  Glad you brought that up! 

Here’s a list of some of the signs and symptoms of White Muscle Disease found in horses: (Let me know if any sound like things you’ve heard the doctor say about Muscular Dystrophy)

  • elevated CK level on blood tests
  • muscle weakness
  • difficulty rising from the ground
  • impaired cardiac function
  • respiratory distress
  • only able to stand for short periods of time

Here’s a snippet from a paper written by M. Aleman at the Department of Medicine and Epidemiology at The University of California in 2007.

“Horses have a number of muscle disorders which share similar clinical, histopathological and in some cases molecular features with humans. Thus the horse can be considered as an animal model for human muscle diseases.” *(Source)*

So, since they can be used as a model for human muscle diseases and they have a mortality rate of 30% – 45% (source) for affected horses, why haven’t they cured muscular dystrophy in humans? (Keep in mind, that mortality rate seems low, but I have to wonder if all the horses are given the supplements in time.  The disease seems to move faster in horses. As humans maybe we have enough time to build back what muscle has been lost.  I have to say, even a mortality rate of 30%-45% seems way better than the 0% we have right now.)

It could be simply that Selenium and Vitamin E do not work to cure this in humans, right?  If that is the case, then why doesn’t it work? My other question is, have their been any trials on the effects of Selenium in people with Muscular Dystrophy? Let’s dig a little deeper!

Stick with me! I know you have to be a little intrigued!

Here’s a few of the positive studies:

  1. 5 patients with Muscular Dystrophy were studied and given 600 mg of vitamin E and a high amount of selenium (4,000 mcg Na2SeO3), which got very good results in all five patients studied. “All improved their grip strength. . ., two normalized their gait, another two can now sit down on their heels and stand up, one patient can now walk on his toes, one can now get up from lying on the floor without using a chair and two patients have improved their physical capacity. . . No side-effects were observed.” (Source: Orndahl G, Sellden U, Hallin S, Wetterqvist H, Rindby A, Selin E. Myotonic dystrophy treated with selenium and vitamin E. Acta Med Scand. 1986;219(4):407-14.)
  2. This wonderful quote from a Neurologist that wrote about using Vitamin E for a treatment back in 1951! “The peculiar muscular degeneration of muscular dystrophy may be produced in animals is caused and is only caused by lack of vitamin E. Human muscular dystrophy shows identically the same peculiar degeneration. The key to the cure of muscular dystrophy is vitamin E.” (Source: Rabinovitch R et al (1951) Neuromuscular disorders amenable to wheat germ oil therapy. J. Neurol. Neurosurg. Psychiat.14:95-100.)

And for now those are the only two studies I can find that shine any sort of hope onto this find.  I’ll do some more digging and see what else I can come up with.  To me it looks like most of these studies were probably done in the 1950s (around the time they figured out the treatment for horses) so I may have to dig up some old medical journals.  This could be an interesting adventure.

There are also quite a few studies out there that show no benefit from using these vitamins and a few that almost deter the use of them completely   They were mostly done in the 1980s. It is important to note that no adverse side effects were reported from any of these studies.

My thought on vitamins are simple.  If they are supposed to be in our body and we are deficient in them, it only makes sense to get them back to normal levels.  

I do want to say that high levels of Selenium in people can cause issues! Here is a dosage guide but AS ALWAYS consult a doctor before you change your child’s regimen or your own.  These dosage guides are the recommended dosage.  There are maximum allowable doses, that is why it’s important to discuss what amount your child can take daily. 

Children 1-3 20 micrograms/day
Children 4-8 30 micrograms/day
Children 9-13 40 micrograms/day
Adults and children 14 and up 55 micrograms/day
Pregnant women 60 micrograms/day
Breastfeeding women 70 micrograms/day

Ok.  I think I’ve given you enough information to soak in for a while.  Let me know what you guys think.  Are you intrigued at all by this information? Do you think I’m an idiot? Let me know! 🙂

Every cure starts with an idea.  Instead of sitting around waiting for the scientists to create one for us why don’t we do what we can.  We can take charge of our health and the health of our children.  Be conscious of your family’s food as well as their environment   Don’t be scared to ask for a blood panel to see if your children are vitamin deficient.  If they are deficient then supplement to make sure they have all they need to live healthier lives.  With no cure for muscular dystrophy out there all we can do is make sure life is lived to the fullest.  The best way to do that is try to naturally heal.  Take charge of your family’s health by not being afraid to ask questions and always, ALWAYS do your own research.

Thanks for taking the time to read this long winded post.  I hope it can help those who are willing to think outside the box.

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Eaaaaster!

Our family had a fantastic Easter.  The weather was beautiful and the food was even better. What was so great about this weekend was definitely watching the kids hunt eggs. I love to watch their little faces light up every time they find one.  

The main reason for my post today is to brag about Levi’s energy levels.  This kid has been on the go, non-stop.  Friday, after school, he ran around the yard playing for at least an hour straight.  He was running at a faster pace than normal and we noticed his gait was much more normal.  Then, our daughter, grabs the volleyball to throw it to Levi, and he catches it! We were so shocked we both started applauding him.  He hasn’t caught a ball in as long as I can remember.  This may not seem huge to most people but if you have a child with DMD, you know what these little things mean.  

Not only has his energy level been sky high, he has been so playful and funny lately.  He’s cracking jokes and being a normal gross boy and WE LOVE IT!  We have seen a definite change in Levi this week.  It’s been about two weeks on the new path for the Vecttor and I can say it is working. 

The best thing is that Levi is trying to do things that he wasn’t trying to do anymore. We’ve noticed that he is pushing himself harder and really trying to see what his body will do.  It’s almost like watching him as a toddler all over again. 

The last two weeks have been a huge WIN for Levi in his fight against Duchenne and we couldn’t be happier to watch our son flourish in the face of adversity.  Image

One year.

Today marks one year since we received Levi’s diagnoses of Duchenne Muscular Dystrophy.  I can’t say that it’s gotten easier to accept but I think we are learning how to live with it.  Of course we still have trying times and we don’t know what the future holds but I’m learning to accept the unknown.  For me, it’s hard because I need to know the outcome.  I need to know the plan and with Duchenne there is no plan.  

When he was first diagnosed, I literally felt my heart break.  I can’t describe the pain in any other way.  “Not my baby” I kept saying over and over to myself.  I couldn’t bare it. I wanted to take it away.  I prayed for God to give it to me instead, but that mysterious God of ours must have not heard me.  

When Levi was born, my life was complete.  I had a beautiful baby girl and now my beautiful baby boy to complete our family unit.  I mean, how cute are these two?

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When I was told that Levi may not be around for more than his late teens or early twenties I flew into Momma Bear Mode.  Those words did not compute with me.  Their treatment plan was a joke, to me.  NO CURE? What does that even mean?  It means I was doing a ton of research day and night.  I feel like all that digging and research and the late nights crying at the computer screen paid off.  I found the answer to my prayers, for the time being, in the VECTTOR.  With no harsh side effects and video proof that it was working for other patients, I couldn’t pass up the opportunity to try this treatment.  A year later, here we are still seeing results and improvements.  No, it’s not a cure, but it has given Levi energy, restful sleep, a bigger appetite, and so much more.  This is our treatment until a cure is found. 

I can say that my superhero is my son.  I think of all that he goes through on a daily basis and how much he still shines. He still smiles, he is still thoughtful of others, and he is always giving hugs and saying “I love you” as many times a day as he can.  When I think of the future it does scare me but I know that Levi has touched and will continue to touch the lives of everyone around him.  

Levi never throws a pity party for himself and he’s always telling us how he’s going to be the next Spider Man.  As a mother, I want to see that.  The only way to see that is if we find a cure for Duchenne.  We have to invest in the companies that are using CUTTING EDGE SCIENCE.  Exon Skipping and Stem Cell Therapy are getting close.  We have to stay on the front line for our children.  If we don’t, we may let a cure slip away before we knew it existed.  

Take your sadness and your anger and let’s channel it into something positive!  Let’s be the thorn in the side of BigPharma and the FDA.  Put the pressure on them to get the ball rolling on some of this amazing science.  If they can approve pills that cause problems they can approve pills that help.  I can’t stand to see another boy lose his life while we wait for these muti-million dollar corporations to fund the science and the right trials.  

I would say that an army of moms would be pretty scary.  Let’s show them that we won’t sit idly by and wait for them to pull their thumbs out of their butts.  The time for a cure is NOW. I won’t stop fighting until Duchenne is GONE and I will say good riddance to it with a HUGE smile on my face….

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so that I can see THIS SMILE for the rest of my life.  

 

Vitamins and Nutrition VS BigPharma

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Here’s a topic that probably won’t sit well with most.  Let’s talk about a natural approach to Duchenne.  For now, we don’t have a cure. The only treatment is steroids (officially) and that causes more permanent damage for a little more walking time in our children’s lives.  The treatment my son uses was not suggested by the neurologist, in fact, she tried to deter us from it.  My stance is that if she doesn’t know much about it, how can she discredit it so quickly?  Levi even improved on his Northstar test by two points and she still would not admit that it is working to his benefit.  Why? Let me tell you.

Pharmaceutical companies are not pushing natural treatments.  They aren’t going to because that would not make them any money. They aren’t in the business of curing people, they are in the business of creating customers.  I’ve worked in the medical field for 10 years and I’ve seen pharma reps wine and dine doctors to push their pills.  If you don’t believe me, that’s fine.  I’m not forcing anyone to take a natural approach.  I’m only here to educate the parents that want to learn about how we are treating Duchenne.

Todd Harrison from Defying Muscular Dystrophy is a 24 year old man with Becker’s MD.  He has some great information on his page as far as the vitamin regimen he is using and his approach at clean eating.  He has already seen results in his energy level and more.

My question to all the doctors and organizations that are pushing for a cure is why aren’t they letting us know about ALL the options?  Why did I have to search the internet just to try a natural approach?  Why does my son’s neurologist all but roll her eyes when I say my son won’t be taking steroids? Because she doesn’t make any money off the Vecttor. She doesn’t make any money off me buying vitamins and supplements.

I may sound like a conspiracy theorist ( if you know me that’s not too far of a stretch) but I have found that questioning everything is not necessarily a bad thing.  I think the problem is that everyone follows their doctor blindly without questioning their motivation for prescribing certain drugs.  Some doctors are great, don’t get me wrong.  I’ve worked for some fantastically brilliant and caring doctors but the ones caring for my son are mostly cold, non caring, and try to discredit any natural approach I take.

It’s not like I’m saying “Oh well!” and doing nothing.  If a disease is causing my child to be deficient in something it would only make sense to naturally try to restore that deficiency. I didn’t go to medical school but that doesn’t mean I’m an idiot.  I can see changes in my son that no doctor can tell me I’m making up.  I’ve recorded video before and after and when my son can do things he wasn’t able to do a year ago, I count that as a miracle and that I’m doing something right.

You have a right as a patient to be exposed to any and all treatments available.  I understand that some people will try to sell you snake oil and false hope.  Don’t be taken by fools that have no proof to show you.  Be smart about your decisions and research fully any and all treatments you may discover.  My turning point is always to talk to other patients that are trying it.  Don’t be afraid to ask.

We all eat horrible diets and don’t get enough vitamins. That statement is for sure true.  Don’t shop at the WalMart.  Shop at a Farmer’s Market in your area.  Buy fresh veggies and fruit and meat that isn’t pumped full of antibiotics.  If your only taking in man made and processed food then you are only hurting yourself.  We can defeat a lot of things just by eating smart.  GMO’s and processed foods are not meant to be part of our diets.  It only make sense to remove them completely and start being smart about what we put into our bodies.  If it didn’t grow in the ground or that animal wasn’t raised on a private farm, Don’t eat it.