What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Friday, 17 October 2014

Here we go again

We had our first meeting with the neurology team at Westmead Children’s Hospital this afternoon since the Immunoglobulin IV last weekend. The doctors were amazed at Beaver’s change. If I would describe our son last Friday the first word that comes to mind would be ‘ragdoll’. He had deteriorated significantly and was barely able to sit up. His swallowing was dangerously affected and the neuropathy had traveled up to his hands. There was no movement whatsoever in his toes or legs anymore.
Today he, ever so gently, kicked a tennis ball with his left foot for the dog. And he can slightly wriggle his toes.
I know, I know, he’s not exactly on a trajectory to represent his country in soccer, but hey. This actually IS a small miracle.
Anyhow, the neurologists are now quietly confident to diagnose Beaver as having picked up an inflammatory neuropathy somewhere along the way (possibly after one of those many infections from falling over). This is good news. No, this is excellent news. Since it is not inherent in his type of HSP this means his sister will not get this. It also means treatment is possible – and the IG IV should help him regain function. Possibly even be able to stand again and take some steps.
Now, how much function he regains depends to some extend on doing physio - stretches, strength exercises and some equipment like AFOs (Ankle and foot orthodics) and down the track a standing frame (his body will need to get used to standing again slowly).
The lovely Deepa, one of the neurologists at the hospital, rang the CPA straight away to request urgent physio for our son. The CPA rang me back some hours later.
They were exceedingly sympathetic to our story and what our son has just been through. But unfortunately, no, physio won’t be easy. They just don’t have enough physiotherapists at the moment, you see, and there are actually no spots available. None. And really, “what these doctors need to realise is that we are not an emergency service”. 
I see.
Physio could mean the difference between a 13 year old boy possibly walking again or not. The CPA is ‘not an emergency provider”, ok. 

But it sounds to me they are not a provider at all – since no physio seems to be available. None. At. All.
So what exactly is the point of the Cerebral Palsy Alliance?!?
Someone higher up the food chain will ring me on Monday to discuss options in further detail. I wish them luck.

1 comment:

Anonymous said...

Hello Heike,

I am very concerned to hear about the lack of response to your urgent needs from the CPA. I hope they step up. The exercise physiologist should be a good point of call. They have a full gym too of course. If they cannot provide physio then they should liaise with appropriate hospitals so that Kai gets appropriate services immediately to help in his rehab program. Mona Vale Hospital has a full rehab department which would be excellent but it is only for adults. I know they see some 18 year olds perhaps something could be done there?? Not sure. Get CPA to speak to them. I have
always find it pretty much impossible to get any sort of timely or regular service from the CPA other than the once a week soccer program which is very good - but I pay a weekly private fee for this of course.