For various reasons, I lost momentum in maintaining this blog, and now over a year later, I’ve finally re-kindled the motivation to continue what I started last year.
I want to capture a chronological record of our journey of discovery with Perthes and therefore I have a few topics I need to include to bring us up to date! So now it’s time to write a few posts in one hit!
Second opinion – January 2018
We kicked the year off by getting a second opinion. It felt the right thing to do and something many friends and family members were advising us to do. Not because we lacked confidence in our consultant, but as part of our own education process, and needing to reassure ourselves that we were doing as much as we could, and not missing anything. We went to see a top paediatric orthopaedic consultant, Mr Aresh Hashemi-Nejad, also Medical Director at the Royal National Orthopaedic Hospital, Stanmore. He validated our understanding, and approach for treatment/management at that time.
James’ arthrogram – February 2018
The next step was to have an arthrogram, which is when an X-ray image is taken of the inside of a joint after a contrast agent or “dye” has been injected into the joint. This image gives a more detailed view of inside the joint and the bone than a standard X-ray.
This entailed James’ first ever general anesthetic, which although is a common procedure, we still couldn’t help but worry about. Funnily enough, the biggest trauma was James’ dislike for anesthetic cream and getting the cannula in, and injecting the anesthetic itself. There was no pulling wool over his eyes with ‘here comes the cold ice-cream’! Needless to say, he was asleep within seconds, and the speed in which he went from crying to a flop of his head, then set me off. It’s just a bizarre experience, walking to the theatre room with James, and then having to leave him, even though you know he’s in good hands.
When I went to see him after the procedure, I knew he was fine because his first words to me were, “Can I play on the ipad when we get back”…all was well! And as promised, 2-3 hours later, once he’d come out of woozy mode, quite happily eaten a few biscuits, and passed the ‘walk to the loo and wee’ test, we were all walking back to the car park.
The results of the arthrogram showed that right now, there was no need for any surgical intervention, there was nothing that would make a difference/improve the prognosis, which we were relieved about. Obviously if surgery is needed at any stage we will consider it, but equally, we hope we can get through this without any invasive treatment.
Follow-up x-rays in April and July 2018
Both X-rays showed signs of ‘progression’. Sadly, not in the positive sense, but as in how Perthes ‘progresses’ through the phases, where the bone continues to collapse or soften. There’s not a lot to say at these consultations other than to try and take away any positives you can. The consultant could still see a clear ‘case’ that was sitting well in the socket, and cartilage, and still not recommending any need for surgical intervention, so we go away each time, hoping that the next scan will show something else, and that we keep James out of pain in the meantime.
Follow up x-ray in December 2018
Having gone through the usual routine of getting the x-ray done before seeing our consultant, we were pleasantly surprised when he came in and said ‘we’re winning’. With that he meant that the December x-ray compared to the July x-ray showed ‘no change’. That for us was ‘progress’ and for once in the positive sense!, We’ll take it thank you very much! And Merry Christmas!
Read my next blog which talks about the Perthes community.
The Cookes Take on Perthes 