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 http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html, 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?