parentingcfs

Navigating adolescent CFS

Graded Exercise Therapy – Part 3 September 11, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 8:59 pm

Our girl went happily to see the Exercise Physiologist last Thursday – our second visit. It sure helps that he is a funny guy who entertains her whilst asking all the right questions. As I’ve mentioned before activity is so much easier for her if it’s enjoyable.

During the hour long appointment the EP reviewed how the last week had been for her…answer: unusual due to Japan trip but still gave him some idea I guess… both verbally and by looking at the schedule she’d filled in and coloured. Yellow for really tough, blue for moderately tough and green for easy. Advised her to colour in according to the effort required, regardless of whether the activity was so enjoyable she didn’t notice the effort required at the time…. Here’s where I feel slightly uncomfortable because I think she’s been making some progress by focusing less on how she’s feeling and more on having fun. However I can see he’s approaching this from the physiological point of view so we’ll go with it where necessary. He also took her blood pressure several times, and her heart rate and explained to her why she feels slightly dizzy every time she stands up as her blood vessels are not constricting quickly enough. We also talked about anxiety and, when I raised it, school. He supported my earlier encouragement of her to not constantly strive at school. In his usual style he stated that ‘he didn’t care if she went to school and got dumber’. Yay someone who gets it. Apparently the cognitive function is the last thing to return to ‘normal’ and it certainly seems to be the aspect giving her the most trouble these days….since she’s not expected to do much exercise.

We left with a plan to go to school 9 to 11:30 everyday (except Fridays when there is an activity she wants to be a part of from 2 to 3:30) and exercise for 10 minutes a day. Our girl also needs to make a list of ‘green’ activities ie; those she can do and not feel significantly more tired afterwards. Sleep doesn’t count apparently! (Not that she ever feels refreshed after sleep…. I can’t imagine what it’s like waking up just as weary as when you went to bed…every day.)Plus she has some more charts to fill in.

I feel relieved to have someone listening to her and telling her what to do. I feel like this guy is really on ‘our team’. He asks all the right questions and obviously ‘gets’ her. I’m concerned the 10 minutes of exercise is a little randomly assigned but I am prepared to think that may be my issue with ‘preciseness’!

We have an appointment to see the entertaining EP again next Wednesday. CFS paediatric specialist Monday. We’re busy with appointments these days. The school told me Thursday they’re pretty sure our boy had an asthma attack at the end of a game of footy.. ( He said oh yeah, it happened once at footy training too and once before at school! Do you think he might have mentioned it?????) So we’ve been to the doctor for him too. Honestly, we’ve gone from hardly using the health system to around 3 appointments a week! At least Andrew seems fully recovered from the shingles episode! And we have many other things to be grateful for.

Hope all is going well in your world.

 

 

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7 Responses to “Graded Exercise Therapy – Part 3”

  1. Sue Jackson Says:

    Hi, Annie –

    Thanks for all your kind and supportive comments on my latest blog post!

    Is your daughter receiving treatment for her OI symptoms? You mentioned that the doctors do understand that managing BP is a problem for her, but are they treating it at all? I know that “real” treatments are harder to come by in UK and Australia than they are here in the US, but treating OI is an essential step, especially for kids and teens who often respond amazingly well. There are lots of treatments to try, including Florinef and beta blockers which have worked miraculously well for us (Fl for my boys and BB for myself) and for many other teens I know. And, of course, simply ingesting huge amounts of salt and fluids can also help, though its effect is greatly improved when combined with a medication for OI. I do know of other ME/CFS patients in Australia taking beta blockers for OI, so I know they are available there.

    It’s just a thought, in case you hadn’t considered it yet. I’m glad to hear you’re having such a good experience with this EP, but I do hope that GET is not the only treatment being offered. Treating OI would allow her to naturally increase her exertion/exercise very easily.

    I hope you don’t mind my making these suggestions. I sincerely appreciate your understanding and support and wouldn’t want to offend you. Keep us posted!

    Best –
    Sue

    • Annie Says:

      Sue you couldn’t offend me. One of the main reasons I am blogging is because I want to do the best thing I can for my girl and it’s exactly these conversations I want to have…so thanks!
      I’m about to write a post about the paediatric CFS specialist we saw today who I really quizzed about the OI stuff amongst other things thanks to your reminder. She was really honest with us about how she had missed the OI in patients for a long time and said try increased salt and fluids for a month and if no improvement she’d refer us… I forgot to re-ask the Florinef question as it certainly seems there’s a good chance our girl would be helped by it but I think the specialist was basically saying she didn’t think our girl was seriously enough affected by the OI to warrant it. On reflection I want to ask her whether daily nausea and occasional dizziness isn’t ‘enough’. But I guess we’ll try the fluid/salt thing (have already been trying after reading your posts) and take it from there. Unfortunately our girl doesn’t like salt or sports drinks so it’s a bit of a battle and was good for her to hear from the doctor today that she needs to try upping salt and fluid intake.

      Sorry about the blogger feed, thanks for letting me know, I’m not sure what it’s about. Thanks for subscribing with Feedburner.

      REALLY appreciate your feedback. I will not hesitate to push for medication if the fluid/salt intake increase doesn’t help with the nausea. I think we wouldn’t even be onto the OI as much as we are if I hadn’t read your blog so thanks so much.

  2. Sue Jackson Says:

    P.S. Blogger is still telling me it can’t find a feed for your blog when I try to sign up to follow 😦

  3. Keena Says:

    I found your blog thru Sue jackson. I hope to follow you and your journey since I too have CFS. I was diagnosed in 2003.

    • Annie Says:

      Thanks Keena. I’m so sorry to hear you’ve been ill for so long. Thanks for reading my blog and let’s hope some solutions are found soon. Best wishes

  4. Sue Jackson Says:

    OK, I gave up on getting your feed to come into my Blogger feed and just signed up for the FeedBurner e-mails. Looks like this will work!

  5. Sue Jackson Says:

    Hi, Annie –

    Don’t worry – I wasn’t offended at all! The problem is that I just don’t have time to keep up with all of the blogs I want to follow (well over 100!). I struggle just to try to read each one once a week (or two weeks), so I very rarely have time or remember to go back and check for replies to comments I made. I see here that I actually clicked the button on this post to tell me when comments are posted, but I guess I didn’t even manage to read your reply in my e-mail! ha ha It’s my own fault for trying to do too much, but I never seem able to decrease my load.

    Anyway, now that I know I can’t offend you (ha ha), I’ll just be blunt – your doctor is wrong about OI when she says it doesn’t have a serious impact on your daughter. A lot of people don’t understand this (I didn’t in the early years!), but OI is behind almost all of the symptoms of CFS. Very few of us actually faint or even feel dizzy often. In CFS, the effects of OI are more commonly felt as fatigue, weakness, low energy, brain fog, achiness, sleep dysfunction, and many of the other common symptoms of CFS. This is exactly why I didn’t think either Jamie or I HAD OI…until Dr. Bell tested Jamie for 10 minutes, and I saw the effects for myself.

    The other thing that opened my eyes was how both of my sons responded to OI treatment – it improved almost all of their symptoms dramatically! When Craig started Florinef, he became almost symptom-free, except for rare crashes. All of his symptoms disappeared (his CFS was milder to begin with) – chest pain, back pain, headaches, exhaustion, post-exertional crashes – all of it is gone with Florinef. Before Florinef, he missed 35 days of school in a year; after, usually only about 12.

    Jamie’s CFS has always been more severe, but the effects of OI treatment for him were just as dramatic. He went from being bed-ridden about 50% of the time to going back to school full-time and only missing about 12-15 days the next year. He was able to play soccer again! His recent worsening is from Lyme, not CFS, but even so, getting the saline IV (another OI treatment) leaves him feeling much, much better all-around.

    So, I agree with what you said here – if the extra salt and fluids doesn’t do the trick (and it probably won’t have a big effect on its own), then it’s probably time to start trying some other treatments (though she will still need lots of salt and fluids!).

    Since your daughter got CFS so recently, has she been tested for various viruses? You have a unique opportunity early on with CFS. Some people do recover fully within the first few years, especially if you can figure out what infectious agent triggered CFS to start and treat that. For instance, mono (I think maybe you call it glandular fever?), caused by Epstein-Barr Virus is a common culprit, especially for teens. We know a teen girl whose CFS began with a bout of mono when she was 14 or 15. She was treated aggressively with anti-virals (as well as Florinef for OI) and was able to gradually go back to school. She is now a beautiful, intelligent 18-year old, off to college on her own and doing really, really well. Her CFS isn’t gone completely and I think she still takes at least some meds, but she is so much better that she is able to live her life and do most of what she loves to do.

    Ok, wow, I’ve really babbled on here, haven’t I? Sorry to run on and on for so long! I will try to keep track of your posts and comments better!

    Sue


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