Wow, I can not believe that it took me this long to find this board( my family has medical problems coming from all directions).
I am posting today concerning my DD who is 6. She was dignosed with Celiac Disease in 1/07. She has been on a GF diet ever since her biopsy came back +. Her numbers came back - for the first time in April of 07.
I requested a DEXA scan for her because she has been experiencing unexplainable severe and chronic leg pain since Oct 06. We finally got to the endocrine Dr last week and found out that her DEXA scan Z score did show that she does have JV Osteoprosis.
He is currently running more labs to see if she has another autoimmune disorder that could also be causing the JV O ( he already agrees that CD can cause it). Meanwhile he wants me to look into giving her Fosamax or Pamidronate to help her build up her bones.
Has anyone else here had to make this choice? Both meds seem to have big drawbacks but they seem to do a great job at building up the bones.
Hi Jen2be2: I so sorry to hear about your daughter, and am assuming you've done some reading on idiopathic juvenile osteoporosis. Even though she has Celiac, there still could be some other secondary cause which would make it the idiopathic kind of bone loss, unless the Dr is completely convinced that the Celiac is the "only" cause. I would read as much about both kinds of juvenile osteo that I could get my hands on. I have a Dr in So CA that is the co-head of an osteoporosis research center that may be able to help your daughter. My Dr is a fantastic clinician, very intelligent and incredibly compassionate. I don't know where you live, and since we can't exchange that info, I would look into the Osteoporosis Clinic at Loma Linda, if you're in So CA, or the one at UCLA. If you live in Northern CA, check with a Univ Hospitals up there for a second opinion. If you do live in So CA, I can post the Drs name and address, if you are interested.
If you are happy with your daughter's care so far, then stay with the Dr you have now, but if you want to see a specialist in the field look towards the Univ Hospitals in your area with a osteoporosis dept or mineral metabolism dept.
I hope you find some answers and appropriate treatment for her. Good Luck and let us know how it's going. Take Care
Last edited by DesertBloom; 02-27-2008 at 07:10 PM.
Hi Jen, so sorry about your daughter. I'm not a doctor, but I was under the impression that, in a young person, once the malabsorption issue (in her case, celiac) is corrected, the intestines can then heal and start absorbing nutrients, which in turn should allow her to regain some bone mass. My dietician friend told me that in a child, the healing is relatively quick (months).
Perhaps I'm biased: although I commend your MD for investigating other causes of the juvenile osteo, asking you to investigate bisphosphonates to give her somehow raises a red flag. These drugs were never even intended for pre-menopausal women, let alone a growing child!
You're probably feeling overwhelmed right now-understandably so. All I can tell you is, as a mother, trust your gut instinct. If a treatment is proposed that makes you feel uneasy, take a step back and do some research first. And never be afraid to say "no". Good luck with all this; do post again and let us know how your daughter is doing.