parentingcfs

Navigating adolescent CFS

RCH CFS Clinic Part 3 August 24, 2012

Filed under: CFS Resources,CFS Symptoms,CFS Treatments — parentingcfs @ 5:56 am
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Our girl woke up with a little more energy today which was good timing as it was Royal Children’s Hospital day!

For a start, going to the hospital is so much nicer now it is in the new building…money well spent I say. Also our girl got to have both parents along this time…you know how much teenagers LOVE that! Nah, it was all very cosy… she doesn’t see enough people at the moment to be too cheeky with the ones who hang around!!

Anyhow, feel great about the hospital clinic again. It turns out that the physio we are seeing at the hospital is good friends with one of the physios our girl’s been working with so all very easy to work together. So the physio session was a discussion of that, a breathing session for our girl…6 deep breaths in a careful position with chin dropped…and a 5 minute shoulder massage!! (Jealous me??? Ok maybe a tiny bit!) The physio says our daughter’s shoulder muscles are incredibly tight. Are your children’s? It was suggested the breathing exercise could be used in class to perk herself up. Deep breathing is certainly something I see as very helpful in helping our girl return to full health. She has breathed very shallowly since she became ill….and of course used to breathe beautifully as a swimmer. That changed overnight.

After that we had a brief session with the lovely Occupational Therapist who gave us some forms to fill in about sleep patterns and daily activity. We have done similar work with the exercise therapist last year and it was very beneficial…it was just the exercise part that wasn’t quite right for us in that situation.

Then we had a half hour break so we could get some lunch and give our girl a rest from concentrating. After lunch our girl had half an hour with the psychologist and then her dad and I did. It was all very supportive eg “Do you have any concerns about…?” etc.

It’s so NICE to have professionals telling you you are doing the right things AND helping you try to make things better. I really do feel like we have a team by our side at last! EVERY child with this diagnosis needs access to a group like this. I’s not everything but it’s a great beginning.

Hugs to all and do tell me if you notice your child’s slumped posture and if their shoulders are very tight? The physiotherapist says posture IS an issue for all of them.

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