parentingcfs

Navigating adolescent CFS

RCH Specialist review appointment April 11, 2013

Filed under: CFS Treatments — parentingcfs @ 12:48 am
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I think, in the world of the CFS diagnosis, we have been rather blessed to have our specialist. Whilst she has not been able to offer us much in terms of treatments or explanations, she has the wisdom of vast experience. True, the lack of answers is incredibly frustrating but at the very first appointment this doctor told us one thing that has helped us keep our sanity and that was that our child’s social life must come first (before academic and sporting..although if any of these overlap it is ideal) I’ve written about this before but it’s impossible to overemphasis just how helpful this advice has been for us as parents.

In short, when your child is struggling to hold onto their ‘real world’ by their fingertips the temptation to think ‘school attendance above everything’ is great. And certainly, if your child has the energy to keep attending, study and socialise, or even just attend and socialise it’s a good way to do it. But when you take into consideration the child’s inability to sensory gate, let alone see the page in 20/20 vision it’s easy to understand why school attendance is so exhausting.

Our child recently told us, after struggling to attend once a week for months, that it was just too hard to be there now so no fun at all. And if a CFS kid isn’t enjoying school (most of these kids like studying when they are well and many love it) it’s time to look at other options.

So, our girl is no longer attempting to get to school but has started Distance Education maths with a view to staying out of school for the rest of the year if necessary. This has taken a lot of physical pressure off her body and has been the right decision for her at the right time.

Yesterday our girl came to her specialist appointment for the first time in 6 months. I had attended the previous two alone as she had been too unwell. ( I suspect this is the only illness where parents regularly rock up to appointments alone?! Certainly our specialist never betrayed surprise!) I was relieved to have her with me as I suspect the doctor was that I did.

Our girl left the appointment feeling good about all her choices. She had told her specialist that she was happy to no longer be trying to get to school for the time being but hoped to get back into it gradually next year. Also that she has regular visits from friends and from next term will be going to her old primary school, on the next block, for an hour once a week to read with the 5 to 7 year olds. The primary school is delighted she wants to be there and happy for her to come or not come depending on her health that day.

I still have my angry and sad moments. I wouldn’t be human if I didn’t. And sometimes I wonder if I should be angrier. But, for now, acceptance is serving my daughter well. I’m still looking for answers and following the research ..more about that later…

At this point my daughter is rarely in pain. Her main symptom enemies are bone heavy fatigue and nausea. If pain were a bigger issue we would not be accepting the status quo. Would not be able to.

Enough for now. Smiling and waving.

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6 Responses to “RCH Specialist review appointment”

  1. jennie Says:

    Hi I think my daughter miss almost 17 has the same specialist she said the same thing to her a year ago about putting social first but doing vce has been extremely stressful but with the advice of the specialist she is only doing 2 subjects this year and will finish off vce next year at RMIT If all goes well. She is booked in to begin the rehab program next month as an inpatient at rch . She has been sick since glandular fever in 2009 and hoping the program will help her cope . Today we went to yet another doctor a cardiologist and she had to have a tilt table test to confirm low blood pressure . Nasty test it induces a faint . and now im worried the test will induce a crash. Like your daughter my daughters biggest stressor is school its very difficult to know what is the best thing to do. We just keep riding the roller coaster of me/cfs and hope for the best one day at a time. all the best to you jennie

    • parentingcfs Says:

      Hi Jennie! Nice to ‘meet’ you. I suspect tilt table test will cause a crash…however hopefully you will get some helpful medication out of it? My daughter finds midodrine very helpful and did find Florinef super helpful for 5 months. As you may have read we are trying the alternate route a bit more at the moment but will go back to fiddle more with meds if we don’t get any progress through herbs. I hope you are getting enough support personally. We have a small group that meets in the inner north if you are interested in meeting other mums. Some people like to get together and talk about things, others don’t so I understand whatever you prefer! Meanwhile, thanks for commenting. I think your daughter has done the right thing just doing 2 subjects this year. I’ve heard good things about the RCH program and really like the clinicians they have there. Hope your daughter benefits greatly.

      • jennie Says:

        Hi thanks for the invite to a get together ,that would be great .I find it really frustrating and upsetting talking to people who do not understand and I often get sick of explaining it, even my husbands mother says “its all in her head” . Where do you get together? My problem is Im in the eastern suburbs Murrumbeena and I don’t drive . If it is near transport that is cool. Please let me know when your next meeting and I will let you know if I can make it. thanks again. Jennie.

      • parentingcfs Says:

        Sure Jennie. It’s terrible when family around you can’t understand. I am just about to write a post about Dr Valling’s talk. Her book may be useful for your mother-in-law to read…or even just see that it exists! I’ll be in touch.

  2. For some time, we too thought ‘school attendance above everything’, and I got that same message from most doctors we consulted. It was so stressful for my daughter and for me, constantly worrying about whether she’d be well enough to attend school the next day and whether I was doing the right thing when I did take her. Although the teachers and the principal were very kind, a regular high school really isn’t set up to meet the needs of a student with CFS who can’t maintain regular hours. I had to work hard to find a doctor who would support our decision to give distance education a go. My daughter has been doing distance ed for almost two years now. It was the best thing we could have done for her. It took such a load off her — physically, mentally and emotionally. This year she is doing a part program (Year 9), which involves just four subjects instead of the usual eight. The distance ed school caters specifically for students who can’t go to school regularly, so their system is flexible and their goal is to meet the needs of each individual student. They understand that there are some weeks when my daughter can’t do any work, and they never put pressure on her — all they want to do is help. The school runs events at the campus for those children who can and want to attend — these events focus on social stuff, which is great.

    • parentingcfs Says:

      Sorry it’s taken me ages to reply to you Wendy. I’m a bit behind at the moment. You are spot on about the load taken off our girls by pulling them out of school for however long is necessary. Once you get your head around it it’s so clearly the right thing at the right time…and such a relief. I’m sorry that you had to search to find a doctor to support you in this. I know ME/CFS Vic has started some serious education of GPs. The word cannot spread fast enough.Thanks for your support as we made this decision. So helpful to have encouragement from others with similar experiences.


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