DISCLAIMER: The following post contains anecdotal information and my thoughts. It is not meant to reflect medical advice pertaining to any other person.
For those of you who are only in touch via this blog, the news is good. Cautious as ever but good. As we come up to the 3 year mark of our daughter’s illness she is back at school once a week for 2 hours. This may not sound much but as she had been completely out of school for 9 months and barely attending for 8 months prior…well this is huge. And I smile about it every day.
I have so many things to write about pertaining to the last three years but this first post will only be about doctor – prescribed medicines that we feel have helped our girl get back to this stage after a terrible low point for several months last year.
First, I would like to clarify that my daughter’s symptoms appear to me (and her BP doctor) to have all fitted neatly into POTS (plus PEM? or is that just part of the POTS for some?) ie clearly lack of vasoconstriction and hence inadequate blood delivery to the brain, gut and peripheries. What has caused the POTS is where there are disagreements globally. Clearly my daughter’s connective tissue is somewhat lax. Has it always been that way? Or have there been environmental contributors? More on that in the next post. She has the clicky joints common to hypermobility, but certainly not all hypermobile people are ill. And she belongs in an unusual but certainly present group known as ‘Stiff Zebras’ – ie they have symptoms of something known as Ehlers-Danhlos Syndrome but are ‘stiff’ instead of ‘stretchy’. So many of the teenagers I come across with a CFS diagnosis are also hypermobile..it puzzled me that my girl wasn’t. It’s possible that her muscles stiffened to compensate for weak connective tissue in her joints….maybe?…..I know one doctor has mentioned it as a theory. (I remind you again that this is really just my ramblings!)
So, taking the above into account, it is not surprising that the pharmaceuticals that have most helped our girl to regain at least part of her life are related to improving and stabilising blood volume and pressure. Florinef gave her 5 months at the beginning of Year 7 (last year) where she was attending school every day, doing very well academically though still unable to participate in sport. Most importantly she got to make friends at the start of high school here in Australia and those friends (and others from primary school) have been crucial to her well-being. Unfortunately, in May, Florinef suddenly stopped being ‘enough’ and she went rapidly downhill.
In November of last year our girl started on Midodrine (a vasoconstrictor). She takes a dose twice a day and it is very clear when the dose is wearing off as her fatigue and neurological impairment (usually first visible as irritability!) come back with a vengeance. She still takes a small dose of Florinef as well.
In our case, a melatonin dose in the form of Circadin has been an absolute blessing and enough to help her through the initial ridiculous issues with sleep. Without a dose she would be unable to get to sleep until past midnight, despite lying in bed in the dark from 8:30pm. It breaks your heart watching someone try so diligently to follow instructions..in this case in the form of good sleep hygiene..and not get any results…. I am so very grateful that Melatonin worked for my girl. She still takes it but also sometimes listens to sleep guiding meditations…and always listens to music. She has developed an ability to pick music that helps her sleep….
This is a good place to stop. There has been so much more than ‘medicine’ involved in this journey and all of it has been important but it deserves another post! (Plus I really must go on an ‘outing’ with the girl and get away from this computer!)
May your news be good news!