We had a scare last week.
It wasn’t huge on the scale of things, but it’s been niggling in the pit of my stomach for a week now.
After being told back in February that Frog’s walking delay was NOT due to hip dysplasia, we had a letter telling us otherwise. After the countless appointments we’ve been to and the blood tests and the physio sessions, this was a setback. And a confusing one at that.
The letter was written by a pediatrician we have yet to see, after he thought that we had failed to turn up to an appointment (we hadn’t, but that’s another story). It was a very pleasant letter, forwarded by our GP, but the sentence at the top of the letter had me in tears.
Problem: Mild hip dysplasia, joint hyper-laxity, mild developmental delay
Lack of sleep combined with confusion just opened the flood gates. And then the tears turned to anger. I went through all the possibilities in my mind, constantly coming back to the one that I most feared. There’s been a mistake. I misunderstood. My two year old does, actually, have a dislocated hip.
The thing is, we have never actually been sat down and told what she is constantly being referred for. The GP originally referred her for suspected hip dysplasia. Given that she was 19 months at the time and still not walking, it seemed like the most obvious answer.
But she was x-rayed and examined and – although a bit clicky – the hip was given the all clear.
So then she was referred to a physio for the flexibility (or hyper-laxity, hypermobility, bendiness – whatever you want to call it). But the specialist nurse requested to see us again, to check progress. By this time (I lose track amongst all the appointments) Frog was actually up on her feet. She’d just turned two and was a wonky walker, but a walker all the same.
But she was sleeping lots. Some nights, there would be up to 17 hours of deep sleep. This concerned the nurse and she ordered blood tests.
Blood tests came back negative of anything scary and again we heaved a sigh of relief. But still the nurse was concerned. And because she’s thorough and wanted to erase all questions, we were referred to a pediatrician.
Or so we thought.
It was then that we received this letter out of the blue. And I started to wonder if the initial x-ray had been re-examined and a problem had been found. I asked my buddies Jane and Emma if they knew what “mild” hip dysplasia meant. I vented steam by writing cryptic, angry posts on Facebook.
I made lots of phone calls, was put through to various different people and was kept on the line waiting a fair few times.
And then, after a week, I got the call I’d been waiting for.
“She doesn’t have hip dysplasia. It was a mistake. You shouldn’t have had that letter. We got our wires crossed. Really sorry.”
I’m too relieved to be cross at the admin error – or whatever it was.
My bendy girl has jumped through yet another hoop. Which is quite fitting really, considering she’s recently learned how to jump and actually take off from the ground, even if it is only a millimetre.
I wonder if you got someone else’s letter? and I wonder if they’ve got the right info.
Total CRAP! but I guess this stuff happens in an overstretched under funded system.
Hooray for it being wrong.
No, the letter was for us, but the pediatrician hadn’t seen the referral letter. So that’s where the confusion was. F was originally referred for suspected hip dysplasia, but that was actually ruled out back in Feb. Although the letter made me think otherwise!
Delighted that you got a good outcome and that she is doing so well. This is just typical of things at the minute in the health service. At least your letter wasn’t the other way around, but still it would make me annoyed. I had a doctor lately inform me they were operating to remove my thyroid, I was in total shock. When he left the room I looked at the file and realised it was someone elses, not mine at all. I too was relieved but then cross.
That’s true, it could have been so much worse. And with a sister who’s a doctor I know how hard the health professionals in the NHS work and how easy mistakes like these are to make. x
Thats good news. Phew!
I loved the video on FB today too. xx
Ha – she was really playing to the camera!
That is great news but awful they messed you about so much. Hugs x
Just one of those things I guess. Not ideal at the time but I can see how it can happen. Overworked, understaffed, etc etc.
Great news but totally disgusting to have sent you the wrong diagnosis! Sheesh! Hope you guys are all ok x
We’re all fine. Relieved and fine!
Oh my god…that’s, firstly, amazing news. And, secondly, I can’t believe they faffed you about for so long getting it right. Especially when there’s a little child involved you would think they would be utterly thorough.
It’s the admin side of things that let us down. Just a lack of communication and then not being able to get through to the right people on the phone. Frustrating, but at least it’s all clear now!
It makes me so angry how our girls get passed around a system. Why can’t one person take contol rather than passing them around like a commodity. Erin is currently under 3 different depts, with three different consultants, plus the speech therapy. No one then sees the bigger picture.