Navigating adolescent CFS

Orthostatic Intolerance & adolescent CFIDS July 25, 2011

Filed under: CFS Diagnosis,CFS Resources,CFS Symptoms,General — parentingcfs @ 9:30 pm

A week or so ago I started investigating something called Orthostatic Intolerance (OI).

My interest was initially prompted by Sue Jackson’s statement, on her wonderful blog,  that research has shown that 95% of people with CFIDS suffer from OI.

OI apparently takes many forms but basically for CFIDS sufferers it involves unusual rises in heart rate (postural orthostatic tachycardia syndrome -POTS)  and/or drops in blood pressure (known as neurally mediated hypotension – NMH) when in an upright position. Out of interest we popped a heart rate monitor on our girl straight after she got out of the shower and sure enough her heart rate had jumped to 130 just from that exertion.’Very uncontrolled testing,’ my engineering husband points out – but nonetheless of interest. No wonder the poor kid feels like she’s recently done a marathon most of the time–because she has!

Upon further reading I became very interested and somewhat excited. Why? One simple reason. If our girl has OI ( as shown by testing under slightly more stringent conditions than mum leaping around with a heart rate monitor!) we can DO SOMETHING ABOUT IT and it’s likely to make her feel a whole lot better. Now that’s exciting! (More on what we can do in a later post or you can find the links through Sue’s blog above.) It’s still only treating the symptoms – can’t treat the cause when we don’t know what it is!- but it may be a start.

Long story short, we now have an appointment with a clinical pharmacologist who will be able to test our girl. Of course the appointment is not until September and funnily enough (yeah laugh or you’ll cry stuff) it falls on the Friday of the same week we finally get to see the CFIDS specialist! However if I’d waited around until we saw the CFIDS specialist we would probably have been waiting another 2 months after that for the testing!

So I’m learning to be proactive in my support of our girl and our paediatrician  is being very supportive. I emailed her last week asking for the tests and she had us come in the next day for a quick impromptu appointment just to check blood pressure and heart rate so she could write the referral. Makes a world of difference to have support like that. Of course the referral says ‘mother has requested’ the tests. I have to deal with being ‘a squeaky wheel’ as I explore all avenues in the quest to improve our girl’s situation! And based on the evidence available this looks like a pretty good avenue. We shall see. Whatever the test shows, we shall all emerge from this experience stronger and with new skills! Well at least with an understanding of words like orthostatic!

Have you had to be a ‘squeaky wheel’ on your child’s behalf?


3 Responses to “Orthostatic Intolerance & adolescent CFIDS”

  1. Karina Says:

    Hi The cart or the horse? I always feel it is the horse…..
    But now it a symptom it needs addressing – makes it all the more harder to recover….

  2. Jo Says:

    I’ve read about his some, also. It’s particularly interesting to me as my daughter has had difficulty with similar issues (not sure it would be called OI) for a long time. We’ve been to the doctor many times since she was about 8 (now 17) as she frequently gets lightheaded in the mornings or when she gets up. She once was taken by ambulance to the hospital when she passed out x2 at her day camp program. The doctors always say it is “syncopi” and should not be cause for concern–that she just will always need to be careful about getting up too quickly. However, the neuropsychologist who tested her (she’s had lots of trouble with brain fog and concentration since the mono began last January) said this is definitely not normal and she should have a full medical work-up. The lightheadedness has become worse and lately she’s been having lots of room-spinning dizziness. We’re still doing more tests. We have an amazing pediatrician who has really gone to bat for my daughter so I haven’t had to be much of a squeaky wheel with the medical issues….

    • Annie Says:

      Sooo glad you have a good paediatrician Jo. We’ve been fairly lucky too though lack of knowledge is the biggest stumbling block. I’m more and more convinced that if we could solve the OI issues my daughter would feel a lot better. I will be pushing this issue at our next appointment. it certainly sounds like this is a real clue to what is going on with your daughter too. I hope the testes find some solutions. As you may hace found by now, Sue’s written a lot on Orthostatic Intolerance.

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