Discussions By Condition: Muscle conditions

3yo son has spinal fractures and unexplained osteopenia - any ideas why?

Posted In: Muscle conditions 3 Replies
  • Posted By: Anonymous
  • February 15, 2010
  • 05:52 AM

My 3yo son has multiple compression fractures in his spine and after all kinds of testing, we've figured out he has osteopenia but no doctors can figure out why. We have seen an oncologist, a rheumatologist, an endocronologist and an orthopedic at Duke and they are all stumped. He has all the appropriate levels of calcium, vitamin D, hormones, etc. He has tested negative for leukemia and osteogenesis imperfecta. We just can't figure out what is causing his osteopenia and it is so frustrating! Anyone have any other ideas? I saw online that kids with celiac disease often are osteopenic...but I don't think he has any other symptoms for that. Help!

To add to the mystery...when he was 7mo he had a ton of pain in his right leg and it turned out he had a lesion inside his right femur - we had it biopsied and it was inconclusive. Meaning, not cancer, not an infection, just a mystery. After being in a cast for 3 months the pain was gone and he hasn't had pain since. At 2.5yo he had back pain that seemed to last for about a month which is how we discovered his compression fractures. He wakes up probably 1x a week with severe leg cramps and foot pain. He also had a ton of diarrhea as a baby that I thought was a milk allergy although the doctor didn't seem to think so. As soon as I stopped feeding him any food with lactose in it, the diarrhea would stop. So from age 15m (when he stopped the bottle) - 2.5 years, he didn't have any dairy products. After that, an allergist recommended that I start a probiotic daily and that allowed him to eat dairy again. Around age 3, I stopped the probiotics and he now has zero problems with dairy.

Anyone with any other ideas on what could be causing the osteopenia would be appreciated! We are hoping he doesn't have any other fractures in the future....

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3 Replies:

  • Could it be a strange presentation of osteomyleitis from the biopsy?
    Anonymous 42789 Replies Flag this Response
  • My 3yo son has multiple compression fractures in his spine and after all kinds of testing, we've figured out he has osteopenia but no doctors can figure out why. We have seen an oncologist, a rheumatologist, an endocronologist and an orthopedic at Duke and they are all stumped. He has all the appropriate levels of calcium, vitamin D, hormones, etc. He has tested negative for leukemia and osteogenesis imperfecta. We just can't figure out what is causing his osteopenia and it is so frustrating! Anyone have any other ideas? I saw online that kids with celiac disease often are osteopenic...but I don't think he has any other symptoms for that. Help!Have you had him tested for Gaucher's Disease?
    Anonymous 42789 Replies Flag this Response
  • i stumbled upon your post while researching info for myself. i am going through the same type of thing. im going for genetic testing this week for eds(ehlers danlos syndrome). my aunt had it and they always advised us to not worry about it due to its rarity. now that my symptoms have been ignored and i am disabled in my 20's,they think i have it. definatley consider it,its a connective tissue disorder that can effect various parts of the body. dont stop persuing a diagnosis because i have been to numerous drs that said i had strained muscles.now i am disabled and need spinal fusion. good luck and my thoughts are with you.
    Anonymous 42789 Replies
    • January 20, 2011
    • 08:32 PM
    • 0
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