Just thought I’d better post an update before we add something new into the mix today!
Today is Day 11 of our girl taking 5mg of Midodrine twice a day. She takes one before she gets up..with a full glass of water or juice if she can manage it..then one 4ish hours later. It is not recommended to take one before bed as increased vasoconstriction whilst supine is not something we are seeking!
Has it made a difference?
I would have to say yes.
Her blood pressure is certainly on average higher than it was when she is upright. On the first day it felt strange ‘inside her head’. I suggested it was her brain saying, “Holy Cow where has all this blood come from..yippee!” She doesn’t find me as funny as find myself : ( Yes she is 13 now. Anyhow there are several indications that she feels a little better on this drug:
1) she takes it without complaint
2) she regularly eats at the table with the rest of us rather than asking for the food to come to her room
3) she has had either an appointment or more than an hour visits from friends pretty much everyday over the last week and has not crashed as badly as she would have previously.
4) she asked to go to the mall where she likes to shop last week!!!! We went for 2 hours and the crash was minimal.
All of these are very significant signs to the hovering parent!
Of course, we continue to see the physiotherapist whom our girl completely trusts. Last week we saw his colleague for the first time in 6 weeks and she commented on how much more our girl could do in the session. It was lovely to hear that as one doesn’t notice the small improvements so much when seeing her daily. Compared to the 35 degree leg raises done on the first visit, our girl’s legs can now be raised to a 90 degree angle regularly. (Not independently, the physio raises them, but the increased flexibility is important as it shows neural tension has been improved) Exercises are done at home but I do wish we had access to this kind of expertise and equipment on a daily basis….in an affordable manner. Our physio and the hospital are working together now so hopefully this program will become established. Please note this is not GET as it is misunderstood by most people, this is a carefully personalised clinical pilates approach that addresses neural tension.
Oh there is still no progress with school and the brain fog (or brain frog as a very sick girl in the UK calls it ..shout out to you N!) still stops her reading… a real sign of how ill she still is.
Today we are off to try something new. Sacro-cranial massage! I know! Sounds like fun huh?! Will fill you in later…..