Hello,has anybody experience with fibrodysplasia in children. Does anybody know about treatment FD using high dosage Vitamin D3 and calcium? My 6 years old nephew is diagnosed with CFFD ( fibrous dysplasia, so far diagnosed in his skull). Is it possible to stop the growth of FD applying high doses of Vitamin D and calcium instead bisphosphonates? We are looking for a centre where his disease can be fully diagnosed and where he can start treatment. Kind regards Ewa

Asked by  Ewa on September 21, 2015

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  • Ewa
    Participant
     Ewa on

    See title

    Answered by  Ewa on

  • IAW
    Participant
     IAW on

    Has your nephew’s Vitamin D levels ever been checked? Does he take any Vitamin D? Is the FD causing him pain?

    Answered by  IAW on

  • Ewa
    Participant
     Ewa on

    Hi unfortunatelly his Vitamin d level has not been checked. He does not take any Vitamin D. FD does not couse him any pain.

    Answered by  Ewa on

  • IAW
    Participant
     IAW on

    Where does he live (USA?) so I know what latitude/longitude? Does he get much sun exposure? Can you get his Vitamin D levels measured? How much does he weigh? If it is not causing any pain, then how was it diagnosed?

    Answered by  IAW on

  • Ewa
    Participant
     Ewa on

    He lives in Poland (50.287397, 21.455971 ) . In my opinion he has got a standard ( for polish children) sun exposure. Next week we will measure his Vitamin D level .He has no pain as I mentioned before. His diagnosis is based on his MRI and CT.
    In addition he has got café-au-lait skin pigmentation.

    • This reply was modified 1 year, 1 month ago by  Ewa.
    Answered by  Ewa on

  • IAW
    Participant
     IAW on

    Hopefully you can open the following link at
    http://www.vitamindday.net/wp-content/uploads/2014/10/Sunshine-Calendar.pdf. It does a great job of showing where countries fall for “Vitamin D Production”. As you can see Poland lies at a latitude that Vitamin D can only be made in certain months of the year. It is color coded to tell you, depending on skin color, how long you must spend in the sun to get enough. (This usually means between the hours of 10am-2pm and with face, arms and legs exposed.) So if you get his Vitamin D checked next week you will see if he even has an adequate level in the “sunshine” months. (I think the answer will be no.)
    We here at the Vitamin D Council promote a level of 50ng/ml or 125nmol/l to keep you healthy so compare that to the level they measure. (Make sure they do the correct test, 25OHD and NOT 1,25 Dihydroxy (Calcitrol).)
    So even if he is getting “enough” in those months, he definitely goes deficient during winter. (Just like everyone else in Poland including yourself unless you take supplements or have a sunlamp.)
    You will need to read https://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/ it is very important. Please let me know about how much he weighs and what his level is. (For children Vitamin D is based on weight.) Also there is a connection between low Vitamin D levels and café-au-lait skin pigmentation.

    Answered by  IAW on

  • Ewa
    Participant
     Ewa on

    He is 125 cm long and 25kg heavy.

    Answered by  Ewa on

  • IAW
    Participant
     IAW on

    The Vitamin D Council recommends 1000iu for every 25lbs of body weight therefore he should take 2000iu a day. You will also need to make sure that he gets all of the necessary Vitamin D “co-factors” to go with it (diet and/or supplements) and you can read about them here at http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/.
    If you did test him, let me know what his levels are when you get them.

    Answered by  IAW on

  • Ewa
    Participant
     Ewa on

    I’v just received his results . His Vitamin D level is 27,5 ng/ml.

    • This reply was modified 1 year, 1 month ago by  Ewa.
    Answered by  Ewa on

  • IAW
    Participant
     IAW on

    So if they have not already, I hope they give him 2000iu a day. If he were mine I would not wait until he gets to 34kg to give him more, I would give him 2500iu at 28kg and then 3000iu at 34kg and so on.
    Just so you understand if you do not give him any Vitamin D supplement, that blood level will continue to drop during the winter months.
    As for next summer I would not discontinue the supplement but depending how much he is outside, maybe cut back a little.
    If you have any more questions please let me know. I will do my best to answer them.

    Answered by  IAW on

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