Amy - posted on 01/20/2010 ( 11 moms have responded )
My 1 year old was diagnosed in November 2009 with a single osteochondroma. Since then I have learned that she has multiple osteochondromatosis which is also called multiple osteocartilaginous exostosis, multiple hereditary exostosis (MHE).
The first one we found was in the ulna of her left arm. So farm is has caused her left arm to be shorter than her right arm and it is ovbiously affecting her growth plate. She has 2 different ones on 2 different ribs on her right side that I found in November as well after having this brought to my attention. In December after having xrays taken of her lower limbs we found several more. She has 1 above her right knee, one below her right knee, one above her left knee and below her left knee, one on the lower end of her fibula on her left leg and this month I found on on her right index finger at the knucle.
I wasnt sure if anyone else was dealing with this or knew someone that was that could tell me a little bit about what they have been through. So far its really a waiting game....
An osteochondroma may grow in a child or adolescent, but its growth usually stops at maturity.
Most osteochondroma are diagnosed in patients aged 10 to 30, but my daughter is 1 and if these do not "usually" stop growing until she reaches maturity I am just worried as to how big they could get and/or the damage that it could do to muscles and veins as its growing and starts restricting blood flow.
If anyone has any advice I would love to hear it...