It seems our boys are across the board with this, but some boys with DMD do have issues with low vitamin D levels. Boys using steroids are also at risk for developing osteoporosis/brittle bones.

Our son has been combating low vitamin D issues for years now. He's had all kinds of lab workup done ( ruled out Celieac Disease, Parathyroid problems, etc.). Inspite of giving him 2,200 iu's of vitamin D along with a caltrate on a daily basis, his levels are still in a subtherapeutic range. In the past we have tried giving his D with a vitamin E to help with questionable absorption problems only resulting in toxic E levels. * Side note: vitamins A,D, E, and K are fat soluble vitamins and you can reach a toxic level of them if not carefully monitored.

So, Dr. Leshner from CNMC has precribed for our son 50,000 iu's of vitamin D weekly. Our son is to take this dose weekly for 6 weeks then convert over to 50,000 iu's every other week. He'll have his vitamin D levels rechecked in 2 months. We are starting this process on Saturday so I can observe for any adverse effects from the increase dose.

I have heard of prescribing fosamax, actonel, etc, products for our boys from time to time ( which has me a bit worried for my own personal reasons) but have any of your children ever taken this high amount of a vitamin D dose before? I'm just curious of the results not so worried about the side effects. Dr. Leshner attended a seminar recently and this is what an endocrinologist is recommending for our boys with low Vitamin D issues ( atleast, initially).

If anyone is curious to know - A vitamin D dose this high requires a prescription and cost me $20.00 for 12 doses.

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Seph is taking 4000IU of Vit D daily or 28,000IU weekly. Not at 50,000 but a high level. I have not seen any negative side effects, but won't have more blood work until February.

I did briefly speak with Dr. Wong this week and just after T'giving she flew to the Netherlands to a neuromuscular bone conference. She did not go into details, but said that 'we are doing the right thing' referring to the high doses...I wonder if she and Dr. Leshner were at the same seminar???

Don't know if this helps at all....we don't give Seph any of the other vitamins you mentioned, he takes 2000 IU Vit D with his deflazacort and a multivitamin in the AM and in the PM, 2000 IU with synthyroid, protandim, TUMS, CoQ10 at night...
Lori
Wow, how can those doses not be toxic? I've read that anything over 2500 a day can result in toxic build-up in an adult!
When we went from 1000 iu to 4000, we were told that the higher dose is becoming the standard in bone health when steroids are involved....

Jason Gautier said:
Wow, how can those doses not be toxic? I've read that anything over 2500 a day can result in toxic build-up in an adult!
Went to a naturopath and she recommended 10,000 iu daily.
Justin is 13 and he only takes 2000iu daily. However, his blood work shows him in the perfect range for vit d with that dose.

--Samantha
How do we know how much is too much? Vitamin D has side effects, I found these online:

Side Effects of Vitamin D

Vitamin D side effects can be broadly broken down into 2 categories, which are overdose and deficiency.

Overdose of Vitamin D
Overdose of vitamin D makes the intestines absorb too much calcium. As a result, levels of calcium in blood will increase. This will lead to the calcification of soft tissues in the body like the heart, lungs, blood vessels and renal tubules, that will impair their ability to function properly.

High levels of vitamin D may also have a negative effect on the functioning of the renal system. This will be manifested in the form of polyuria, nocturia, polydipsia and renal failure.

Another symptom of vitamin D overdose include formation of kidney stones that may cause a lot of pain. Mental retardation, nausea, weakness of the muscles, muscle cramps, muscle atrophy, severe headache and nervousness are associated with high levels of vitamin D in the blood. Overdose of vitamin D also makes one prone to high blood pressure and heart diseases.


Lori Ware said:
When we went from 1000 iu to 4000, we were told that the higher dose is becoming the standard in bone health when steroids are involved....

Jason Gautier said:
Wow, how can those doses not be toxic? I've read that anything over 2500 a day can result in toxic build-up in an adult!
I asked Dr. Leshner if he is seeing a pattern of boys with DMD on or off steroids having low vitamin D issues. He said it's across the board.

I think since Duchenne boys are living longer lives and because more of them are taking steroids, clinicians and specialist are starting to take Bone Health more seriously. We have to find a therapeutic range for our son. 2,200 iu's a day is not a therapeutic dose for him. That's why we do vitamin D blood draws, to check his levels. So, we have to find what dose does work for him, all the while, keeping an eye on side effects such as kidney stones. My son may need more vitamin D than other Duchenne boys. Once again, a parent of a Duchenne child may find themselves playing the typical game of, "Pick Your Poison." Kidney stones or a fracture femur?

Christine- that's 70,000 iu's a week. Are his levels therapeutic now? Curious to know also how his energy level is, too. Same question posed to you Lori. Does Seph have more energy?
Tina, Seph's energy level is great...maybe more than I want, I would rather him him relax more..Seph will be 8 in March and during the winter he always slows down a bit...so I am in my "oh, here it comes mode" where I hold my breath until we go back to Dr. Wong (which won't be until Feb). Is Vit D supposed to affect energy??

Tina said:
I asked Dr. Leshner if he is seeing a pattern of boys with DMD on or off steroids having low vitamin D issues. He said it's across the board.

I think since Duchenne boys are living longer lives and because more of them are taking steroids, clinicians and specialist are starting to take Bone Health more seriously. We have to find a therapeutic range for our son. 2,200 iu's a day is not a therapeutic dose for him. That's why we do vitamin D blood draws. So, we have to find what dose does work for him, all the while, keeping an eye on side effects such as kidney stones. My son may need more vitamin D than other Duchenne boys. As usual with this disease, you play pick your poison. Kidney stones or a fracture femur?


Christine- that's 70,000 iu's a week. Are his levels therapeutic now? Curious to know also how his energy level is, too. Same question posed to you Lori as well. Does Seph have more energy?
I am finding this interesting since I myself just had some blood work done and tested very low for Vitamin D. I have thyroid issues and he said that is expected in someone who is hypothyroid. Anyway I wanted to chime in on the Kidney stone comment. I have had a kidney stone and my son who is 18 and not on steroids and has had to undergo 3 procedures this year for kidney stones, and he also passed a small stone over a year ago. I personally would rather give birth again :). My son has a high pain tolerance, and I only thought something was up because I had been through it already myself. This year he was diagnosed with 3 large stones, the smallest was just under a 1/2 inch. He was put under for all 3 procedures. The procedures also involved placement of a stent in his ureter, which made him have to go to the bathroom a lot more often. I am glad that ordeal is over. I only mention it because of the increased risk. As if this disease wasn't already horrid enough we are constantly put in the position of making these difficult decisions.

Susan
We did some experimentation with vitamin d when my son was newly diagnosed. He was not on steroids at the time.

When he was on 5000 iu per day, he definitely had some nice strength and energy increases.

We watched his urinary calcium and blood calcium carefully.

After around 4-5 months on 5000 IU, his urinary calcium went to high, so we reduced the dose.

The interesting thing was that as his urinary calcium went up, his blood calcium went down - it was inversely related.

I'm hoping I'm remembering this correctly...

Anyway, we've settled on 4000 IU per day now that he's older. That's a recent decision, as 15,000 IU per week wasn't keeping him at therapeutic levels (in the 20's).

We'll see how that goes.

It's very easy to track urinary calcium in a 24 hour test (if you do it over the weekend).

One thing to remember on the listed side effects is that those are the effects on a normal body. We don't know how our boys handle D - i definitely think there is something altered about it, as my son was up at 60 at one point, and it only took him a week or two to drop down to 30. Most people's levels don't fall that fast.
This is from the newly published Standars of Care for DMD:

Bone demineralisation and
increased fracture risk

Take careful fracture history
Annual DEXA to monitor bone density
Annual monitoring of 25-hydroxy vitamin D blood
concentration (ideally late winter in seasonal climates) and
supplement with vitamin D3 if level is <32 nmol/L
Dietitian should assess calcium and vitamin D intake

For 25-hydroxy vitamin D concentration 20–31 nmol/L, give 1000 IU orally twice daily, for
<20 nmol/L, give 2000 IU orally twice daily
Recheck serum 25-hydroxy vitamin D concentration again after 3 months on therapy
Encourage weight-bearing activities
Take multivitamin supplements with vitamin D3
Consider bisphosphonates, such as pamidronate
We're done with the high vitamin d dosing (see initial posting). I'm waiting on the next orders for our son. But, here are the latest vitamin d levels.


4/9/10

d2 = 24
d3 = 12
total d level - 25-hydroxy total = 36


10/08/09

d2 = < 4.0
d3 = 31
total d level = 31


4/24/08

d2 = 6.3
d3 = 27
total d level 33


10/10/07

d2 = < 4.0
d3 = 31
total d level 31

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