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Samantha DickensonPostApril 6, 2016, 12:08
Posts: 1
September 22, 2015, 20:18
Normal topicArthrogram

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.

lisaPostApril 11, 2016, 11:12
Posts: 87
September 7, 2011, 13:46
Normal topicArthrogram

I apologise that it has taken so long to reply, I have had a problem accessing the forum and had not seen this until today.

I have to say I agree with the initial prognosis, a child of this age often self heals, with whole head involvement there is of course a risk of the head having some degree of deformity depending on the child's weight and activity. (for example jumping from height and being overweight is likely to squash the head of femur during the softened stage). An arthrogram is not an urgent procedure and since the consultant is talking about a tendon release rather than major surgery I suspect she hasn't put him on the urgent list.

I wouldn't consider private health care, an arthrogram is terribly expensive and unless you already have insurance you would not get any benefit for a pre-existing condition, just remind the receptionist every week or two that you're still waiting so that you don't fall through the net.

Perthes is a terribly frustrating condition, one size does not fit all, so wait and see which is the usual approach for a child of this age, can cause you to worry too much. Best wishes to you and your son.

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