After nearly 2 years living with DMD, I am still so confused on what is right and safe to give my son. He is 7, weighs about 44 lbs, taking prednisilone 10 days on/10 days off, multi vitamins, and calcium/D when he "wants to". I have a cabinet full of vitamins that we try but he won't take. What is the best resource for determining what and how much to give him? Thanks for your help. Cindy

Views: 852

Reply to This

Replies to This Discussion

Sorry it took so long to respond Rebecca,

I posted it 2 years ago so a lot has changed but the reason for the espresso beans is to counteract the ADD side effects of Deflazacort. Before Ritalin, etc. was developed, everything was based on caffeine. Joshua doesn't need the espresso beans much anymore, but he also used green tea, coffee, iced caps, etc. For most people the caffeine would stimulate them, but with the ADD side effects, it balances. The reaction time of the benefit is minutes! The teacher can keep them in their classroom because it isn't a medication and once they see the actions start, they can give him one. They can't overdose on it and can take it as needed.

Naomi
Okay I know it sounds silly but how do you get your boys to take the expresso beans? Do they just chew them up? I bought my son some chocolate covered ones from the coffee shop and he hated them. He chewed them up and was picking pieces out of his teeth for a week! Ha! Maybe I am just unaware about which ones to get and how to give them????
Joshua had a similar problem with them sticking to the teeth, but if he drank milk with them - like milk & cookies - he liked them!  If your son does not like them, he may like coffee with a flavored creamer, iced cappuccinos or green tea.  Recently when Joshua is having really bad days, we have been giving him a quarter of a 3mg melatonin.  He seems to stay calm throughout the day, but not a drug calm... a relax and have fun calm.

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.

Levocarnitine - Mayo Clinic

Carnitor Site

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:

  • Omega-3 fatty acids, such as fish oil, 1 - 2 capsules or 1 tablespoonful oil 1 - 2 times a day, to help decrease inflammation and improve immunity. Fish oils may increase bleeding in sensitive individuals, such as those taking blood thinning mediations (including aspirin).
  • A multivitamin daily, containing the antioxidant vitamins A, C, E, the B-vitamins and trace minerals, such as magnesium, calcium, zinc, and selenium.
  • Calcium and vitamin D supplement, 1 - 2 tablets daily, for support of muscle and skeletal weakness.
  • Coenzyme Q10, 100 - 200 mg at bedtime, for antioxidant, immune, and muscular support.
  • N-acetyl cysteine, 200 mg daily, for antioxidant effects.
  • Acetyl-L-carnitine, 500 mg daily, for antioxidant and muscle protective activity.
  • Amino acids, including glutamine and arginine for muscle protection.
  • Probiotic supplement (containing Lactobacillus acidophilus), 5 - 10 billion CFUs (colony forming units) a day, for maintenance of gastrointestinal and immune health. Some probiotic supplements may need refrigeration. Check the label carefully.
  • Creatine, 5 - 7 grams daily, when needed for muscle weakness and wasting. Certain kidney drugs may interact with creatine. Speak to your doctor to make sure your kidneys are healthy enough to handle that amount of creatine. Your doctor may want to periodically monitor kidney function.
  • L-theanine, 200 mg 1 - 3 times daily, for nervous system support.

Herbs

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.

  • Green tea (Camellia sinensis) standardized extract, 250 - 500 mg daily, for antioxidant and immune effects. Use caffeine free products. You may also prepare teas from the leaf of this herb.
  • Rhodiola (Rhodiola rosea) standardized extract, 100 - 600 mg daily, for antioxidant, antistress, and immune activity.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service