Navigating adolescent CFS

RCH CFS Clinic Part 2 August 14, 2012

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 5:20 am
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The nurse coordinator at the clinic didn’t have time to get back to me yesterday but did call this morning to let me know the team decision. She wasn’t even supposed to be in the office but had popped in for a couple of hours before doing her late shift nursing to finish her to do list. Services like health and education only function as well as they do because of committed people like this right?

So our girl has been invited to participate in four 2 hour sessions with the team over four Fridays. We could do it fortnightly x 4 if we wanted but are happy to do it weekly as close by. They can only offer us that length of time because there are so many children on the waiting list but if our girl needed it she could be referred back again. Which would entail quite a wait I’m guessing. So we’ll make the most of it while we can.

Also the physiotherapist (PT for those in the US) we saw there yesterday called us (even though also not her day at the hospital) to see how our girl had pulled up today. Honestly after 18 months of so little professional support it feels like Christmas! I told her that my daughter was indeed very tired and nauseated this morning but not too much worse than usual. Also yesterday afternoon she told me she was very brain dead after all the concentrating but she was happy to do it as everyone ‘was so nice’.

Talking to the physio further confirmed my impression that this group of professionals really are as up to date as possible and not peddling any outdated and sadly dangerous ideas about ‘just getting on with it’. It’s so great! They are only funded until November and then have to reapply…. Need many more staff than they have. We wouldn’t believe the waiting list know what, I think we just might have some idea!

I also heard today that there is a new follow up study out that followed people diagnosed as adolescents over 25 years and found an 85% recovery rate. Haven’t seen it myself yet but it’s the best stats so far so I’m happy!

I think that’s all for now. We are off to the private physiotherapist tomorrow…and then hopefully our girl will manage to make it to school Thursday….it is Week 5 of term after all! But hey, no big deal! There’s always next week, next term, next year!

Smile and wave boys, smile and wave!


One Response to “RCH CFS Clinic Part 2”

  1. Cheri Portelli Says:


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