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

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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
My son Ryan is going to turn 7 in july.He weighs 43lbs.He is very active.. We found out on october 25,2008. Ryan has a deletion of 48-50. Ryan is taking delazacort18mg, protandium 1/2, green tea extract, haelan 2oz in morning and 2oz at night, Multi vits flintstones 1, Coq 10 200mg, cal + vit D3 1000iu,and also drinks a packet a day of Juven. We are going to start Noni juice soon.Blieve it helps in production of NOS.
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
Thank you all for your info. I guess what I really want to know is what resource is everyone using to determine their supplements and dose? Is there one place to get this info?

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
Some are recommended by the doctors, but we go to two web sites to determine what each medication depletes the body of. They are: http://www.drugs.com/
http://www.truestarhealth.com/Notes/healthnotes.asp
We also discuss and learn from many other parents in this forum. You can read what they have to say, look it up, and talk to your pharmacist to determine how much your son can have determining his weight. Most doctors don't recommend supplements mostly because they don't see anything back like they do with a prescription. Although I do have to say that our doctor recommended the espresso beans. Hope this helps!

Naomi
For those of you giving your sons L-arginine, how are you giving it to them? The capsules I have are huge and my son can't swallow them.
Thanks,
Cindy
Cindy,

I found it very confusing too. We took our son to a naturalpath and she did the research for us and wrote a prescription for a "multivitamin" blend that incorporated all the supplements that we agreed on. We had the vitamin/supplement prepared at a local apothecary. It is in 3 large capsules. We have had it changed a bit over the years, for example, the CoQ10 was first added but then she advised that it was best in another format so we changed. Then my son wouldn't take it separately, so he hasn't taken it in a few years. He is 11 and still walking well, finding stairs hard. That is why I am on here today - looking to see what I should change or add now. I plan to see another naturalpath this coming week to discuss. One thing I am very nervous about is giving him a supplement that will exclude his from a drug study. So even though I want to update his "supplement plan" I am hesitant to do it before PTC gets up and running again (hopeful thinking) as Jacob was in the 2B study.
Sam gets his through Juven. He takes 1/2 packet each day, broken up into a.m. and p.m. doses.

cindy q said:
For those of you giving your sons L-arginine, how are you giving it to them? The capsules I have are huge and my son can't swallow them.
Thanks,
Cindy
hi angela, we have a 7 yr old diagnosed 2 wks ago, so we are a wreck right now....does your son take defl or pred?

Sorry to hear about your son's diagnosis. 

 

Our son takes Deflazacort.  It really wasn't a choice we made.  We live in Canada and that is the standard of care at our Children's Hospital.  We saw an improvement as soon as he started taking it.  I know this is not always the case though as all boys respond differently to the steroids.  He was on the same dose from age 4 until about 6 months ago at age 11.  He started to have a much harder time with stairs, we increased his dose to 24 mg/day and things seem to have levelled out a bit.  He is quite small, only a bit taller than his 6 year old sister, but he is thicker through his middle. 

 

The only side effects he had, which sometimes I forget about because it was so long ago, were dry mouth and he got hairier.  These things only lasted for a short time.  There may have been other minor side effects that went away too, but these are the only two I can think of at this time.  He has no behavior issues or changes.  He does not have cataracts yet.  He is, of course, short, but that just makes it easier to walk - even if he doesn't like being smaller than all his friends. 

 

Let me know if you have any more questions and if I can help at all through this very difficult time.

 

Angela

amit gupta said:

hi angela, we have a 7 yr old diagnosed 2 wks ago, so we are a wreck right now....does your son take defl or pred?

 hi im KP mom, when my son was diagnosed at age 4 1/2 years of age i did my own research and started him on certain vitimins that was adult form because i knew that even though his body age was 4 his body was deterating alot faster he is now 18 happy to say doing well he was not sick until he was 15 almost 16 with first bout of pnemonia he has never taken any steroids i gave asataphalus and a protein drink and his multi, cal,e,grapeseed extract, fishoils,co enzemy Q10 replenex and started creatine about 6 months ago. he had a kidney stone removed in september surgery went fine but to intubate him they had difficult so they tryed three times and did some damage to his throat so he rushed back to hospital wasnt breathing due to the sever swelling  lost him twice the day before he turned 18. but they got him back and said he is a srong kid he was in iCU for two weeks they put a feeding tube in after 5 days not beable to eat or speak we had to learn sign language real quick luckly my boyfriend had taught us some earler. and i crushed his vitimins up and gave it through the tube they said they thought he should have a trac and tube and he refused so we went home with a feeding tube and i started given him green tea and then with in a few days he could at least swollow and he asked for his supplemants and drink he had differculty with the tube in he said get it out and i can do it. So we took him to the drs and they removed it and he has been eating eversence and make sure he gets his supplements and cretine and his protein drink  He will graduate this summer a national honor roll student and want to be a architectural designer. but all his test come back really well and the drs say what ever you are doing keep doing it because it is very unusual not to have not seen him by age of 15. and the whole time he was there for two weeks he was on no antibiotics and never got sick. no break down of skin either. what i would recomend is the turning bed as your boys grow it helps alot with circulation and keeping everything moving we just got his through donations when he got home from hospital and he is alot warmer and i dont have to get up and turn him every hour or two  take care with all this i still feel i have been blessed we dont take life for grant it  and be prepare for anything life changes in a blink of eye but you can always find something positive thank you  sandy

 

Naomi,

I am amazed no one asked this,

because I'm dying to know (maybe I missed it):

why espresso beans?

 

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