Did you happen to inquire about switching to Prednisone instead of Dex?

Tonya,

Our Onc meant I would have to fight him about keeping up the steroids.  We have always been on the same page before, (this is my favorite Onc), and I am not even sure I want to keep Jakob on steroids.  He told me that if I wanted to resume steroids the both of us would have to talk with the head of protocol in Boston (we are in Canada).  I am thinking that I will get the Onc to talk with the doctor in Boston to get a second (well really it would be 3rd, 2 Oncs here) opinion.  I am trying to put this aside right now because we don't even know if it is AVN yet........

We were never told to not drink milk during the day. We just follow 

the no milk or OJ rule for 2 hours before and after evening meds.

Hi, I know I post a lot on AVN! Anyway, Aidan stopped the steroids and he did heal.  I think there are folks on the board that also did variations on that theme and they did heal. I increased Aidan's Vitamin D intake and Calcium as much as possible.  But given Aidan's diet of pretty much potato chips for the last year or so,  I'm not sure diet helped all that much.

We did physical therapy so the muscles wouldn't atrophy and shorten.  I can't emphasize how important this is because if not it,it could lead to actual surgery to lengthen the muscles.  Rest the joints when painful. His oncologists originally restricted high impact sports, but the orthopedist clarifield that was more about pain management than any real damage he could sustain to the joint.  He actually wished me luck in keeping him from running when he felt good. I had a pretty active  8 year old.  Aidan eventually learned when to rest, and to anticipate and accept the consequences of pushing himself to the point of extreme pain.  He loved moist heat, warm baths in epsom salts.  His oncologists eventually approved ibuprofen in the evenings if he was having a painful group of days.  Percoset made him high, and there were a few days when I had no choice but to send him to school high! LOL!!

Anyway, be prepared though, that even though the steroids are halted the damage could continue.  We stopped steroids in May of 2008, and finally saw healing begin in August of 2009.  The best you can hope for is an arrest/lack of progression of the damage.  But according the orthopedist the time table is as follows:  First appearance of the AVN, maximum damage occurs over the next 6-18 month, healing then begins after that.  He expects that Aidan collapsed hip will take about 24 more months to heal.  But at least he's healing.  Even the AVN in his ankle was beginning to heal.  So it's a process that once started follows a certain progression. Of course there more extensive damage that may require surgery, but on the whole, 8 or younger at onset fare very well.

Angela