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Hello Naomi,
Where do you buy Carnitine?, is it liquid?, I have bben giving Juan L Carnitine that gets dissolvd in water.
Thanks
Terry Porcaro said:
At what age did you start giving all these supplements to your children. My grandson is only 4 1/2 years old. He is on Deflazacort, CoQ10 and Vit. D. Dr. Wong didn't recommend any other supplements. I assume most parents incorporate these supplements on their own, but at what age do you begin and how do you choose which ones??? Terry
Joshua's mom said:
Hi Cindy,
Joshua is 6 and weighs 56lbs. He is on deflazacort instead of prednisone, but with it he takes:
1/2 Protandim,
100mg coQ10
Learning Factors School Aid
5mL Carnitine twice per day
1mg Folic acid
500mg L-arginine
multivitamin
1200mg Omega 3-6-9
1/2 B complex
Calcium & Vit. D (500mg & 200IU)
125 mg Magnesium
400 IU Vitamin D
2 x Calm 4 Kids at bedtime
chocolate covered espresso beans as needed throughout the day
We crush and mix it all up with whatever is his favorite that day. He used to be able to swallow them, but is unable to now for some reason. Whatever way we can get it down works though!
Naomi
Joshua was prescribed levocarnitine as soon as he started deflazacort at 3 years old. That was the liquid form. Now it is in pill form and called Carnitor.
Hope you are well,Joshua's Mom.
I have come across Carnitine in one of your postings.What is it and how does it help our DMD boys?Thanks and have a good day.
Wainaina
Here are a couple links regarding Carnitor / Levocarnitine. I believe they should be prescribed to any child on steroids.
Why do think it Carnitor or Levocarnitine should be prescribed to any child on steroids?
It's main purpose is to protect the heart, the muscles, and increase the metabolism. This may be the reason why Joshua has never had an issue with weight gain and has well defined muscle mass for an 8 year-old.
Makes sense to me. It sounds like you've got your son on a regime that works! Thanks for the info.
I found this link on supplements to be helpful from University of MD:
http://www.umm.edu/altmed/articles/muscular-dystrophy-000113.htm
You may address nutritional deficiencies with the following supplements:
Herbs are generally a safe way to strengthen and tone the body's systems. As with any therapy, you should consult with your health care provider before starting any treatment. You may use herbs as dried extracts (capsules, powders, teas), glycerites (glycerine extracts), or tinctures (alcohol extracts). Unless otherwise indicated, make teas with 1 tsp. herb per cup of hot water. Steep covered 5 - 10 minutes for leaf or flowers, and 10 - 20 minutes for roots. Drink 2 - 4 cups per day. You may use tinctures alone or in combination as noted.
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