parentingcfs

Navigating adolescent CFS

NEW Royal Children’s Hospital Melbourne CFS clinic August 13, 2012

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.

Big smiles!!

 

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5 Responses to “NEW Royal Children’s Hospital Melbourne CFS clinic”

  1. Teena Moore Says:

    Wow, my daughter has had post viral stress syndrome since late 2011 and we still are in limbo. She is in yr 10 and missed more than 40% school this year alone. No one has offered us any sort of help for her education catch up. We are waiting to get into Monash, but it sounds like the Childrens has all the support needed. I wish you and your daughter health and happiness. Regards
    Teena

    • parentingcfs Says:

      Hi Teena. Thanks for your wishes and I sure wish the same back to you. I hope your daughter is travelling better than when you were kind enough to comment on my blog. I’m guessing you are south of the city if in Monash catchment but I will send you an email about a catch up in the inner north in case you are interested and get away.

  2. natalie Says:

    Hi just wondering how your daughter and your family are doing? My daughter has just being diagnosed with cfs she is 14 and we r finding it difficult to manage we have just been referred to the rch. She id finding it hard to manage the balance between school and rest. Pls tell me there is some hope and people that cant help her through this difficult time.

    • parentingcfs Says:

      Hi Natalie.I am so sorry I haven’t replied earlier to you. I’m very sorry to hear about your daughter and hope you are getting some support. We have a small group of mums that meet in the inner north…I’ll send you an email if you’d like to meet up with us.

  3. Julie Says:

    How did you come across this clinic. Do you need a referral?


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