parentingcfs

Navigating adolescent CFS

CFS Treatment Part 4 September 15, 2011

Filed under: CFS Treatments — parentingcfs @ 2:49 pm
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CFIDS doctor

So we had our third appointment with the exercise physiologist yesterday.

I had a bit of a meltdown in the morning (not in front of my ill child I hasten  to assure you!) because I want the world to tell me that this particular  therapy is definitely the right path to take. That’s not much to ask surely – a  cast iron guarantee?! The trouble with reading as widely as I do about this  illness – added to my personality type – is that sometimes no path seems the  right path. I just want an accepted path of treatment for my daughter that  the vast majority of the medical establishment agrees on and patients agree  with. And that has research papers to prove its effectiveness. Numbers guys,  I want  numbers! Have to say I’m still getting my head around the fact that  when I ask why these conclusive papers don’t exist the answer I consistently  get is, “Everyone’s different.” I always thought that was the world I existed  in as a graduate of the Arts faculty. I never realised scientists weren’t  operating in a world of black and white facts! Aaah the things I’m learning!

In the absence of this proven path I have to go with the path that seems  most right. I know there are people I respect so kindly following this blog who are pretty concerned that my daughter is attempting graded exercise therapy. Let me assure them I am too! And I am not ignoring medication and supplements. And as an involved and protective mother I really am trying to proceed down this path as cautiously as possible and would not be doing it if I was not feeling so extremely comfortable watching my daughter and her EP interact. Actually comfortable is not the right word. It is literally a joy to watch her sparkle in the one hour consultations. I don’t get to see her like that much anymore.

Without going into too much detail about yesterday’s appointment, our girl is now trying to plan ahead so that she knows when the activities that take energy are going to be and she can pad them on either side with so-called ‘green’ or restful activities. Basically she needs to choose how she is going to expend the small envelope of energy that she has. This complements the approach suggested by the CFS specialist we saw Monday. Her only committed activity at this stage remains school Monday to Wednesday, 9am to 11:30am, and 2pm to 3:30pm, Thursday and Friday. (However she did ask me on Monday whether she could start piano again – woo hoo! She was feeling particularly well at the time so will wait and see if she asks again.)

In addition she will increase to 12 minute daily exercise periods. I still can’t get my head around why the intensity of the exercise is not relevant at this stage (I’m trying I really am!) but it seems to be something to do with the fact that it’s about having fun until she reaches 30 minutes? And again because there is no magic number as ‘everyone’s different’ I guess! She was taught how to measure her heart rate and needs to record it only at this stage. I have talked with her again about the advantage of wearing a heart rate monitor when she is active (thank you the people who have so kindly reminded me of this) She is still resistant which is where I come up against the difficulty of parenting this illness. If it is important for her to be happy and autonomous (which is one thing everyone seems to agree on!) when is it worth persevering with persuasion? Aaaah the joys of mothering! And don’t get me started on trying to get salt and fluids into her (to help with blood pressure issues). I try and sometimes I succeed.

Lastly she now has SMART goals to set and must break each one down into steps. Interestingly the goal she immediately thought of was to be able to swim a squad session. Always great for me to hear her enthusiasm to swim again  as I still worry that somehow all her swimming was due to my influence and I am somehow responsible for this illness. I know I know it’s completely stupid of me to think that way but that’s the kind of thing that just runs through my head at 3am because I am her mother and I think too much…..

My greatest fear is that the exercise will make her sicker in the long run as many people online attest to. The EP made a point of telling us that is NOT going to happen. Twice. I’m still confused and worried! However I really think this guy  has my girl’s best interests at heart, he has years of experience and he certainly believes in what he is doing. So we will go on. Gently.

She is weary again today but still better than she has been I believe. Not as well as she was Monday and Tuesday. One day at a time. One day at a time.

Any thoughts my friends?

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4 Responses to “CFS Treatment Part 4”

  1. Sue Jackson Says:

    Your concerns are all valid, Annie. I do worry about anyone attempting graded exercise therapy, but it sounds like your eyes are wide open and you are mostly focused on how your daughter responds, which is as it should be.

    You mentioned you are worried she will crash from the exertion….and I agree that is the major concern. Many studies and anecdotal data show that if you continually push past your limits with CFS, you get worse. So, the key here is for her to stay within her limits….that is, to closely monitor which activities or how much time it takes to cause a crash and try not to go beyond those limits. Keep in mind that research shows that post-exertional crashes often hit their peak 2-3 days AFTER the activity. Keeping a simple log is the best way to track cause and effect. I use a simple 1-5 rating of how I felt overall each day, coupled with a 1-5 rating of my level of exertion. I just jot those numbers, plus notes on symptoms on a monthly calendar page each day.

    The other thing you can do to determine where her limits are is to use a heart rate monitor. Doing this REALLY helped me a lot! Here’s a blog post I wrote about it that includes a link to a great article:

    http://livewithcfs.blogspot.com/2011/02/heart-rate-and-post-exertional-crashes.html

    Sue

    • Annie Says:

      Thanks Sue. Further to my reply on your blog I have to work out how to get the heart rate monitor to sit on her properly as she is still so slim the standard ones that we have are too loose! Must get that sorted today! Is it possible to buy children’s ones???!!

  2. As the mother of a daughter with ME/CFS, I can relate to your desire for reliable and time-tested methods of treating this disorder. Rest assured that you are doing all the right things. And that is, gathering every bit of information available to you through the internet and clinicians, and then making informed decisions. The origin and progression of this illness is unknown. As I read your blog, it is clear that you are monitoring your daughter carefully while allowing her to still maintain a “normal” life. As Sara, my teenage daughter, points out to me, “it’s mostly about keeping my sanity.” Sara started a blog months ago that she feels has helped her to communicate her experiences with this illness. And the bonus, which I’m sure you’ve also discovered, is that others who read the blog and share this illness, start a dialogue that usually results in new and useful information regarding treatments. Sara’s blog is http://www.whenieverfeelbetter.blogspot.com/ if you’d like to read about her current treatments. My thoughts are with you and your young daughter, and my prayer is that she will return to good health.
    Jen

  3. Annie Says:

    Dear Jen
    Thank you so much for letting me know you’ve been by! Your daughter sure is on a lot of supplements and medications. Brava to her. My girl’s stomach is extremely sensitive and she baulks at much beyond fish oil. We are moving towards a gluten free and dairy free diet but sometimes I’m just so grateful she’s eating that I don’t want to limit her choices. Still, I can keep offering alternatives.
    Thank you SO much for your support. Sometimes I think the mother’s sanity is almost as threatened and I value the support of others immensely. I hope you are travelling okay and best wishes for Sara.


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