Hi,
My kid started Prednisone about 3 months back. The doctor has not given any Vitamin D or calcium suppliments. In many messages i see that kids are having very high dosages of Calcium and Vitamin D suppliments.

Is this on a case to case basis or our Doctor has screwed up by not subscribing the suppliments.

Thanks
Tulika

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Dear Tulika

I am not sure if he has a different treatment regime, I think like most of the data you have managed to get, it seems common to give high doses of Calcium and Vitamin D. It is fo rthe bones as one of the side effects of steroids is thinning brittle bones, with calcium at high doses, it is to give the bones a better chance, and the vitanim D helps the body absorbe the calcium. My suggestion is to get your doctor to read up or even contect someone like Professor Biggar. He is amazing and responds to eveything we have asked him. He has a number of children under his care and is a presented at the PPMD yearly conferences. I have attached one of his presentations for you to go through.

Check slide 12 of the 2006 presentation, it gives the doses.

Good luck and just do what you feel is best, ask questions and dont rest with somothing you feel needs more detail explaination.

Colin
Attachments:
In my knowledge Vitamin D depends on the levels your son has. Your doctor should check the levels and recommend accordingly. As per calcium, there is a standard chart that shows how much intake is needed per day with DMD and steroids. Below is the table. Calcium is best from natural food sources. (Thats what Dr.Wongs team suggests)

Age 1-3 years - 750mg
Age 4-8 years - 1200mg
Age 9-13 years - 2000mg
My son is allergic to milk, so we were already on Calcium with D3 before we started steriods, but I will say that it is our Endocrinologist that is managing the calcium and D3 now, not our neuromuscular MD. Xavier has very low D3 levels and we are up to 1000IU of D3 right now. If your son is on steriods I would recommend that you do have an endocrinologist on board managing the other systems in his body that are affected by steroids...thyroid, kidney, bone density (which is where the calcium comes in along with a DXA scan) and growth hormone, as that is a very important component of the steroid treatment.
Hi Tulika,
I would not mess around with this at all. It is well documented that steroids cause significant bone loss. MD's are very reluctant to recommend supplements. I also take my son to a naturopath.
I was also informed by my sons ND that steroids cause nutrient deficiencies of
calcium, vit D, magnesium, zinc, vit C, B6, B12, folic acid, selenium, and chromium. She recommends 2000 iu even for a child.
I heard that is good to use Calcium with Magnesium.I read somewhere that Calcium is better absorbed by our system if delivered with Magnesium.
These are to try to counteract the onset of osteoporosis. I buy mine over the counter. I just pick up calcium supplements and I also give my son Pepcid AC to try to prevent ulcers. S
Tulika, I see you live in Amsterdam, so the responses you get may or may not apply to you. We buy calcium (w/viatmin D) over the counter here in the U.S. Insurance here does not pay for over the counter supplements nor do doctors prescribe them, though they will sometimes recommend them. If you can buy calcium OTC in Amsterdam (heck, you can buy pot, surly \you can buy calcium heheh), I think you should do so. If it is prescription, I would certainly talk with your doctor.
You need to be sure he is taking calcium and Vitamin D it is very important!
The doctors want Kelvin on at least 1,200 mg of Calcium and 2,000 mg of D3 per day (make sure it is D3), with getting a lot of the Calcium from natural foods (milk, cheese, yogurt, etc.). He is 6. They wanted this even prior to starting steroids, as boys with DMD have bone density troubles even without taking steroids. Calcium is best absorbed taken with both Vitamin D and Magnesium. Michelle
Joshua takes Deflazacort and with it he takes;
Calcium, magnesium, omega 3-6-9, protandim, vit. D, multi vitamin, calm 4 kids (at bed time to relax his muscles), chocolate covered coffee beans, learning factors for school age kids, carnitor (levo carnitine), and coQ10. The coffee beans and omega have a lot to do with the ADD side-effects of the steroids.

Joshua also has allergens to lactaid. He therefore has a larger dose of vitamin D and drinks lactose free milk. Whenever he does have yogurt etc. he has lactaid pills before he eats it. We are lucky though because he loves his vegetables!

Naomi
I also found another site which tells the interactions and depletions medications can give. It tells of supplements which may help as well. http://www.truestarhealth.com/Notes/healthnotes.asp

Naomi

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