Last May 2017, James suddenly started limping. Like any normal energetic 5 year old, he’d been running around, playing tag rugby, going mad on his trampoline, and then suddenly a limp.
As I’ve found out from other Perthes parents (and feel only marginally less guilty), the limp is initially dismissed as a sprain, growing pains, and possibly even considered being put on! It’s assumed it will go after a day or so.
After a few days, we took James to A&E. We were told it was ‘irritable hip syndrome’ or ‘transient synovitis’. Often described as a ‘cold on the hip’, where a virus places itself there instead of the usual places and can occur when a child is feeling a bit snotty. “Come back and see us if James is still limping in a few days.”
Which of course he was. At this time, it was half-term holiday, and James was on the Isle of Wight (IoW) with my parents. They spent a whole day at the hospital doing x-rays, ultra-sounds and blood tests. No-one suggested Perthes at this stage. X-rays didn’t show anything. Ultra-sound showed some fluid on the hip joint, and through blood tests, determined it was inflammation and not infection.
So the advice was to keep up the ibuprofen, rest and it should go in about two weeks. Two to three weeks passed, and James was still hobbling. The Doctor who had seen him on the IoW very kindly rang me to see how James was doing. On hindsight I now realise that he was perhaps concerned that it was more than transient synovitis and was following up which we very much appreciated.
He rightly advised us to get checked again, so off to Royal Berkshire Hospital we went, and got all the tests repeated. (Much to James’ dismay, blood tests aren’t fun for a lot of people!) A week later the ultra sound showed that the fluid had virtually disappeared, and James’ limp had improved, and we were signed off.
With that we went about daily life, moved house, booked a holiday and got on with the summer. There were two episodes during the summer when James was very suddenly non-weight bearing in one of his legs, and complained of pain in the knee. Oddly, he was running around again 24 hours later. We still don’t know if this is related or not. (And a trip to A&E on the first of those episodes didn’t confirm a connection to the transient synovitis either.) Was it just a sprain? Hard to not become the paranoid parent!
James returned to school in September and two weeks in, the limp returned. This time we took him to see a paedriatric othepaedic consultant at a private hospital and got an MRI scan booked in.
October 2017 we finally received a formal diagnosis of Perthes disease. The left and right hips in the scan looked significantly different.
Since then, we’ve remembered back to all the times since James was quite little, and complained of having tired legs when we were out walking, and on other occasions, sometimes complaining of having pins and needles. Other Perthes parents have talked about their child having pain at night and making for a wakeful night. James was always a wakeful baby and we put it down to other factors (dairy intolerance, nightmares, bad sleep habits), but perhaps he genuinely had pain in his legs but was too young to explain. And what do you advise with pins and needles? Hop and skip about to get the blood circulating and it’ll go away. You don’t think it’s because there might be a rare hip condition in the pipeline.
Our learnings: if your child suddenly develops a persistent limp/hobble, don’t accept a diagnosis of irritable hip syndrome/transient synovitis. Persuade your consultant for an MRI or get it done privately if possible. Don’t wait. Perthes is a long process, and waiting to have x-rays every 3-6 months to see a change in shape of the femural head is no good. They call this ‘monitoring’ but you don’t really get the full picture as to why! Had we better understood back in May that this was a real chance of being Perthes, a) we would have pushed for an MRI sooner, and b) we would have known that it’s not just a case of rest to get better, it’s a case of rest to preserve the hip joint as much as possible. Instead, we unwittingly did the opposite and spent the entire summer letting James run and jump about as you’d expect any normal child wants to do.
More about Perthes in the next blog post!
The Cookes Take on Perthes 