Hi, my son recently got diagnosed in April, he is 5. I wanted to know what supplements or vitamins would be beneficial for him. I'm just really overwhelmed.

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Hello, I know this is overwhelming. I am going to send you an I.M so look for it. My son is 6 Will be 7 in July. We give him his multivitamin, vitiman D... If you are on Facebook. I will look for you now. Most of us are there and you can get a bunch of feedback

Hi,

Ask you doctor first to order blood test for vitamin D3 and Calcium level .Based on that you will get to know how much your son needs vitamin and calcium.My son is 11 year old ,diagnosed at age of 9 ,he needs 3000 IU vitamin D3 so we are giving Carlson super daily (400 IU )8-10 drops.Calcium needed 2000 IU ,we are giving him TUMS.We do not use Gelatin ,so came to find these combinations.Thanks

Totally agree with jiasusa5. You definitely need to get the correct Calcium and D3 dosing units based on your son's current levels. We were diagnosed when our son was 6 and totally understand the emotions. Just take one day at a time and slowly everything will fall in place. It just takes some adjusting to the "new normal" for the family. Best wishes

Thank you for all the help. Will ask my doctor.

Dear Alpa

i wa reading a number of your posts it seems you are updated with most information about this DMD, a knew about this about my son 6 months ago and i could do nothing just crying and trying to forget to be able to live normally with him, but at the end i should do something and fast. unfortunately no much information is available in my country, even his doctor could not help us much! he just described L-Carintine & D3 for him.

after my husband's research we are giving him B blex & calcium but i am afraid that we may give him that has side affect on his heart or kidney ! not sure.

can you guid me what i should do about his nutrition and supplementary ?

it was good to know that i need to do blood test for D3 and calcium to see the dose that he needs!

hope to get some information from you to guide us.

 God bless you .

Dear Sam,

I totally understand that the diagnosis is very hard to accept but always remember that Duchenne or No Duchenne, your beautiful son is 2 years only now and never will be again.. so take one day at a time and enjoy everyday with him. I have a two year old son as well (non-DMD) and its a beautiful age. 

I believe that you are not on any steroids at this point and given how young it is, it might be a good choice but I would always defer to specialists. I know its difficult to be in a country that doesnt have many resources so maybe some experts in this forum might help. You could also reach out to Ryan Fischer (ryan@parentprojectmd.org) and he could connect you with the right people to guide you.

As for the supplements and my knowledge, I share information based on what we learnt through discussions with my son's doctors. We never came across L-Carintine so I dont know much about it. Google search brought up this paper - https://www.researchgate.net/publication/257927285_L-carnitine_supp... , which doesnt indicate any specific benefit with L-Carintine but its from 2013 so things might be different.

My son also takes a multivitamin that has B-plex. Its helpful with calming the nervous system especially for boys on steroids. We didnt take it until he was on stable dose of steroids.

You definitely want to maintain his D3 and Calcium level in a normal range and dose will depend on his current levels. Research has shown that if D3 levels are low or high in both cases, it affects calcium absorbency in the body so you donot want to overdose him on D3 either. Its not going to have any severe side affects if its high so dont panic - just get a good bone specialist who can guide appropriately.

Hope this helps.

All the best

Alpa



Sam said:

Dear Alpa

i wa reading a number of your posts it seems you are updated with most information about this DMD, a knew about this about my son 6 months ago and i could do nothing just crying and trying to forget to be able to live normally with him, but at the end i should do something and fast. unfortunately no much information is available in my country, even his doctor could not help us much! he just described L-Carintine & D3 for him.

after my husband's research we are giving him B blex & calcium but i am afraid that we may give him that has side affect on his heart or kidney ! not sure.

can you guid me what i should do about his nutrition and supplementary ?

it was good to know that i need to do blood test for D3 and calcium to see the dose that he needs!

hope to get some information from you to guide us.

 God bless you .

Dear Alpa

thanks for your help.

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