Re: broken bones & CVID

[Guest guest]

,

My son also began breaking bones frequently, with no real trauma to

cause it. They checked his bone density and he had severe

osteoporosis. We now do infusions monthly to build up his bone

density. He does not have CVID, but an antibody deficiency. His immuno

also can not figure out a tie between the issues either. We also took

him to CIncinnati CHildren's to see a geneticist there, and they could

not figure out it either, they think it is 2 separate issues. Plus

they tested the genes for brittle bone disease and he did have a

problem in one of the genes associated to OI (brittle bone disease). I

would ask for a bone density test. It is common in CVID to have GI

problems and malabsorbtion. It would stand to reason with me that

these kids could have osteoporosis because they are malabsorbing their

calcium. We know this does play some of an issue with because

we started giving him high doses of calcium and the bone density did

increase a little. Which they said if his osteoporosis was purely from

the brittle bone disease the calcium alone generally would not help,

only if there is a degree of malabsorbtion would it help. Hope she has

no more breaks! Take care.

>

> I know I don't post very often, mostly I am a lurker. But we have

some

> issues over this past year with my daughter, Hannah, 15, CVID, JRA.

> She has had 4 broken bones, 2 wrists, 2 ankles, very slow to heal,

> requiring weeks-months of physical therapy. Speaking to the

orthopedic

> surgeon, he says it is not related to CVID. Immuno doc isn't sure,

> hasn't made any connection in previous patients. Does anyone out

there

> have similar experiences or is there really no connection?

>

> Thanks,

> (Hannah, 15, CVID, JRA)

>