Navigating adolescent CFS

Orthostatic Intolerance testing December 6, 2011

Filed under: CFS Diagnosis,CFS Symptoms,CFS Treatments — parentingcfs @ 9:39 am

It is a year now since our girl’s first symptoms. In some ways this is a positive milestone. If the statistics work in our favour, we should only have 4 years maximum left of this to go…… She doesn’t really know this, we just say she could get better any day and try to keep things positive. What a pity they could be four such socially developmental years. Still, doesn’t help to dwell.

Actually we are in one of the more positive phases at the moment. She has been pacing herself well, managing her two hours of school four days a week and usually a little outing each day as well. I pointed out to her that it might be a good idea to try some recess time at school as well, to make it easier to deal with non class time next year (which she understands is important for establishing new high school friendships) and today is her second day of trying 15 minutes of recess. The warmer weather means she can spend that time sitting with her friends in the sunshine so it’s a little deceptive to think it’s a sign of any general improvement but it’s a good thing nonetheless.

Meanwhile, we have been waiting for the referral to a cardiologist to come through from our has been over three weeks now. I have called and left a message and was about to call again when our neighbour, also a physician, suggested we just ask out GP to do the in office test we wanted done. Brilliant…I was clearly having a moment where I couldn’t see for looking, to not come up with this myself as our GP had previously agreed to do the test on our son when he was displaying some symptoms last month.

Our lovely GP did do the test. It entailed our girl lying horizontal for 5 minutes, then standing upright, leaning back against the wall and keeping as still as possible for 10 minutes, then lying down again for 2 minutes. Heart rate and blood pressure are taken every minute from the 4th minute of lying down and the child reports symptoms. Some CFS sufferers can’t do this test without passing out in the first minutes of standing. Some can’t even get to standing.

Our girl was nauseous upon standing, then the first thing she mentioned was ‘tired legs’ two minutes later. At 3 minutes the GP and I could clearly see the blood begin to pool in her hands and lower legs as the became redder and redder and our girl said they were very itchy and uncomfortable for the last standing minutes. This discomfort was immediately relieved upon lying down.

The numbers we were looking for to diagnose POTS were a heart rate rise of 30 beats per minute or a rate of over 120 in the ten minutes of standing. The biggest heart rate jump for our girl was only 12 bpm however her heart rate reached 119 at 8 minutes, 121 at 9 minutes and  127 at the tenth minute. This immediately dropped to a heartrate of 64 when she lay down. Is it any wonder the poor child feels so ill?

So, what we learnt from this is what we have always suspected. A lot of our daughter’s symptoms are clearly caused by Orthostatic Intolerance. Her symptoms are not as extreme as others because she is not as orthostatically intolerant as others. All very clear to the lay mother here (there is possibly some scientific miscalculation on my part but the numbers seem to speak for themselves?)! Now to get to the cardiologist to get some fludrocortisone prescribed to see if that can improve things for her. I will fill you in when that happens. Meanwhile we continue to pour fluids and salt into her and it seems to be helping a little (?) Not always easy getting a nearly teenager to do what she should though, huh, what a surprise!

It does seem to me that this test (which was developed by the eminent Dr Rowe at John Hopkins and I can send to you if you’d like a copy) should be a standard procedure but, as I mentioned before, I am only a lay person in all this so I assume there is some reason it isn’t. I’m just very grateful our GP was decent enough to acquiesce to doing it so that we can move forward a little further, albeit at a snail’s pace. As demonstrated by the fact that it is a year since the first symptoms and we are still not on a treatment plan that is available if you look hard enough…. How can this be possible in the developed world?

I’ll finish up here… I think my longest post to date. We are in talks about next year with the high school at the moment. Will fill you in on that after the next meeting.

Thanks for reading. Hope you are having a good day where ever you are : )


4 Responses to “Orthostatic Intolerance testing”

  1. Sue Jackson Says:

    So glad to hear you were able to finally get her tested! Just FYI on the numbers…some people don’t hit the official threshold for POTS and/or NMH until 15-20 minutes, so it’s very likely, her HR would have kept going up if she stood longer…but why make her suffer when it is obvious what is happening?

    You mentioned only HR, not blood pressure. Did she have NMH as well (where the BP falls)?

    The only reason the test is not standard practice is ignorance!! So few doctors understand CFS that it’s not even common knowledge that over 97% of CFS patients have some form of OI. Yes, a sad state of affairs.

    Well, hopefully, this will be the start of some effective treatments!


  2. Annie Says:

    Aah that’s interesting about the 15/20 minutes Sue.
    Her blood pressure didn’t drop at all, in fact rose slightly..except from the 9th to 10th minute when the diastolic dropped 20…
    Interestingly while her heart rate rose 20 immediately upon standing, it dropped 63 when she lay down after standing for 10 minutes. No wonder she felt instant relief huh?
    I still have to get my head around what it means that the heart rate rose but blood pressure didn’t fall… Increased fluids really seem to be helping her..but is blood volume still an issue if her blood pressure didn’t change? And was the 9th minute change just a glitch or would it have happened more if tested for longer? All questions for the cardiologist when we eventually see him I guess…..

  3. Thanks for your comment, I’d love to write something insightful about your great post above but it’s beyond me at the moment except to say that I’m not really on a treatment plan yet either. It’s crazy really for something so serious and life changing.

    Anyway I just wanted to make sure you saw the latest news about the Bond research grant for me/cfs.

    • Annie Says:

      Thanks Sarah yes I had seen the news about Bond. All good news very welcome huh? Hope you are less brain foggy today and thanks for your kind words as always. : )

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