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Hello I'm wondering if anyone has any advice for me please? Our 6 year old son was diagnosed with Perthes nearly a year ago after 5 months of undiagnosed leg problems (so he was 4 at onset). We have been told all along that becuase of his age the long term prognosis is good. However, at our last consultant appt in March, she was concerned about his hip mobility and what exactly was going on in the joint so suggested an arthrogram plus possibly cutting a muscle in his leg at the same time to increase joint mobility. She told us it wasn't very urgent but that we'd probably get an appt to do this in about 2 months time. After a month of waiting, we got a letter this week saying he is on the waiting list which, when I rang up to check, is apparently very long and the receptionist kind of laughed when I suggested he might be seen within 2 months!!
Now I have no idea how urgent this procedure is but my understanding is that if we wait too long, an awful lot can change in that time. We were told that his xray shows that the whole femoral head is now involved and that he is (I think) in the late fragmentation phase. I did ask for a copy of the xrays which she said she would email me but hasn't!
At the moment, my son is in quite a good phase, feeling well and pretty much pain free if he takes it easy. However, because of this, he is much more inclined to want to race about which we were given to understand is a no no. I've no idea about how much damage this might or might not be doing, I feel massively frustrated that we seem to wait months and months for everything and get no further forward and I don't know if I am worrying too much. Has anyone got any advice they could offer? We would consider going private if we had to (although I'm not sure how we'd finance it!) but don't know if just sitting and waiting is the best plan.
Thanks for reading my long rambling message...I'd be very grateful for thoughts.