Severe bone demineralisation is associated with higher mortality in children with cystic fibrosis
I've actually been very worried about this in M. His fat soluable vitamin levels have been dangerously low since 1/08 now. For the last 3 months, he has begun to complain about leg pain that centers in his thigh. And, a regular x-ray in Dec detected an anormality of that hip bone that has not yet been pursued.
We just recently adjusted his vitamins again and the CF clinic is going to re-test his levels to see if its working after 3 months. But, I think its time to start watching his bone density.
I'm amazed at how little attention and priority has been given to this issue. The GI (experienced with CF patients but not part of our CFF because we don't urrently have any GIs on staff there) doesn't do anything because its complicated. The CF doctors refer me to the nutritionalist. The nutritionalist is NOT a doctor and is clueless except to tell me to give him more vitamins. Neuro tells us his vitamin levels are low enough to cause siezures but since his psych has him on Depakote, they don't want to touch it.
The only person even trying to pay attention to this issue is the Heptalogist. He does it because he wants the best for M. But, he continually tells me this is a GI concern not Heptology.
I can only see the abstract to this study. Are you telling me that bone density is now associated with decreased longevity? Because I'm convinced at this point M has GOT to have decreased one density issues and I find that very concerning that it may be inpacting not just quality of life as I knew but now quantity as well.
That actually makes me very angry. Everyone acts like its *just* vitamins. But, this impacts his immune system. The myelin on his neurotransmitters, his ability to store calcium in his bones, his liver function, his heart and kidneys, and everything in between.