Oh my. I almost have to pinch myself to believe. This morning I have taken my beautiful daughter to a clinic filled with compassionate professionals who who were purely there to help us deal with the ME/CFS mire as best we could. You know, the kind of clinic that other chronically ill kids get referred to upon diagnosis?
It is a new initiative that Dr Kathy Rowe (and maybe others that I don’t know of) have fought hard to get up and running. Funding is very limited as I understand it (surprise surprise) but it has been especially earmarked for this project – and there is research going on as well! Halle -bloody-julah!
The clinic operates Mondays and Fridays. This morning our girl saw an OT and physiotherapist mainly together, then the physio got her to do one brief exercise, took heart rate etc. After that we saw a teacher consultant who actually provided us with papers for a student health support plan. Crazy that this is the first time we’ve seen one in 18 months of illness. Also heard about the Education Institute where our girl is entitled to access 40 one on one tutoring sessions a year! Who knew?! I can’t tell you how it felt to have the resources, that other chronically ill children in Australia get, offered to us with the CFS diagnosis. This acknowledgement, whilst still in its’ infancy, means the world and I sure hope is a sign of thinks to come. It cannot come too quickly.
Our girl also had a 45 minute session with a young psychologist which she seemed happy enough about. The approach seemed very supportive and my 13 year old felt comfortable enough by this stage to be fine with me leaving the room. It was a great sign. After that we saw the rehabilitation doctor who is overseeing the clinic. He just got some of the medical details and had a little chat.
Then our girl filled in a psychological test to gauge where she is at. She found some of the questions hard to answer..natural modesty interferes with how one thinks one should respond to “I think I am smart’ for example! However she had no hesitation when it came to answering “I like to hurt animals” with a resounding NEVER! It gave us a few giggles (not the idea of hurting animals obviously) and she kept looking to me for answers and I had to remind her it was how SHE felt about the statement and herself, not me.
Things such as the psychological evaluation and some goal setting that our girl did with the OT (getting to school was the top of her list, as was being able to get out of bed everyday!) helps the team to evaluate outcomes. Science…we like that!
The team is meeting now to see what they can offer us. I suspect it will be participation in the Outpatient program (attendance once a week for 4 to 8 weeks) with the inclusion of our physiotherapist that we discovered last week. RCH does now also have an inpatient program that runs for 4 weeks. There’s a HUGE waiting list for the clinic already apparently and they’ve only been going 3 weeks. We feel lucky to have somehow got in so early.
The emphasis seems to be on helping our girl get a grip on how best to manage the illness in the long term (although she will recover) as well as improving what she can do in the short term.
I’m just so pleased to see such a service up and running at the Children’s. Now to keep the funding going.
I’ll let you know what we hear.