I couldn't agree more that I think that AVN is a lot more wide spread in young kids possibly from the DEX.   My daughter who is 8 is similar to Elke in being diagnosed with AVN and hers if fairly widespread.  I guess like Ann said - time will tell

What does EFS stand for?

I would just like to state my personal opinion on this one.  After Donavynn switched to Prednisone on his old protocol from the Dexamethasone b/c of the risk of osteonecrosis he had a spinal fluid relapse in 3 months.  The last LP he had before switching was clear (that was the day they switched) 3 months later at his next LP he had relapsed.  Now part of me wonders if the Dex was just keeping the leukemia at bay.  However the new protocol he is on is Dex only and when I asked why they told me b/c Dex crosses the blood brain barrier and Prednisone doesn't.  I personally would rather have him stay on the dex and be removed from it if a problem occurred and if they felt that he needed to be removed b/c it was bad enough than be taken off it b/c they think something could happen.  I personally blame his relapse on the switch.  I just don't know whether to be thankful b/c the dex was keeping it at bay and he would have likely relapsed after treatment when LP's are no longer done and would have been symptomatic before we knew.... or if he would have been fine had he stayed on it.  Either way I think that the dex does good things and to me is worth the risk.

Thanks for sharing that, Tonya.  The long term use of prednisone is also AVN. My SIL, who is asthmatic and used prednisone her whole life to treat acute episodes, developed symptomatic AVN in both hips with a right hip collapse that was tipped over the edge by some doses of strong IV steriods to treat her MS last year.  People with lupus who also use prednisone also develop AVN.   I challenged Aidan's oncs when they suggested switching Aidan to prednisone after his AVN diagnosis with Dex, they said that AVN was rare with prednisone.  Really? It was also supposed to have been rare with dex as well.  Aidan was 7 at the time.  I will hazard a guess that since they rarely suspected AVN with prednisione use, and would have blamed all joint pain on the vincristine, they really have no idea about the real incidence of AVN, since not all AVN that develops is painful and there would be no reason to check for it otherwise. You can actually live with AVN if it never becomes symptomatic. I learned that from Aidan's orthopedist.   The long term consequence of having AVN is the possible development of osteoarthritis in middle to old age.  I am guessing by then, many people cured as children are lost to follow-up at or after a certain age. The go/no-go decision is certainly a personal choice and will vary by situation.

Angela