Thursday, 5 December 2013
A day of two halves
Good news and bad in Elin's little world this week. Let's start with the good- her Orthopedic appointment in Alder Hey today went really well. Her hip joints are the same as they were two years ago when they were last x rayed and looking good (children like Elin can be at risk of their hips coming out of their sockets or becoming 'shallow' as they don't rotate, basically because there is no walking and so as the child grows they can simply put, just 'pop' out over time) there is no reason for any surgery or to even be thinking about it. Also, despite Elin's feet gradually becoming quite bent the surgeon was happy that, with the right pair of splints (which we are picking up next week) which will enable her to stand in her frame despite her feet no longer bending at right angles, there is no reason to intervene. When we asked about botox injections for her ankles to maybe help her feet bend into a more natural shape he pointed out that the benefits would only be short term and that's with serial casting too (which would be a logistical nightmare not to mention horrible for Elin) they would still eventually go back into their current position. He said he was against doing any potentially painful intervention that wasn't particularly necessary. We agreed. Crucially, he pointed out he had seen many cases where intervention and especially surgery could set off or even cause terrible dystonia , so knowing that Elin already has a diagnosis of this made him really wary of doing anything. I think we were both quite relived that she won't be going through any potentially painful procedures anytime soon and the surgeon was so helpful and understanding, really taking time to explain things and chat- it was one of those great appointments where you really feel it was worth going, not just a rushed ten minutes being ticked off a list. So now for the bad news. Sadly it seems the dystonia is back and she is not herself at all. Dystonia is a condition she was diagnosed with last January, it's a movement disorder affecting all of her muscles, fairly common in brain injured children and adults but also affecting perfectly healthy kids sometimes, too. It basically makes her muscles shake and tense-up, contorting her body beyond her control and giving the illusion of a seizure or fit. (Pretty confusing when she also has epilepsy and her epileptic seizures look exactly the same.) Anyway, that's dystonia in a nutshell for those of you who don't know, and she has it all the time, it's just sometimes is very well controlled and sometimes it isn't controlled at all (the worst time of which saw us admitted to Alder Hey, terrified, last January). Since this year has been mostly in the 'well controlled' bracket it's been upsetting to see it return this week in such a continual loop (usually you will get the odd five minutes or so of it, then it will go again) resulting in her needing rescue medication twice since it started on Tuesday just to halt the movement. This morning was better for her and her movements became a lot more 'normal' but then came a visit to Alder Hey for her Orthopedic appointment in pretty horrendous weather conditions and coupled with a car seat it was all the ingredients needed for the dystonia to rear it's ugly head again. Half way through our appointment she needed rescue meds after several attempts by us to stave it off with cuddles, changes of position etc, and the buggy was a glorified shopping trolley to carry our bags- we couldn't even bend her to sit her in it let alone fasten any straps. I won't even go into how awful the journey home was with her in this state. So that's where we're up to and I'm just hoping tomorrow is another day and will bring better news for our girl. It was ironic in Alder Hey for me, self confessed christmas-aholic, that the beautiful Christmas tree's and lights and displays in the waiting room and corridors twinkled and reflected in Elin's big, startled brown eyes, almost mocking me as I held her this way and that, trying to help her relax, as if the Dystonia had turned up with claws and bad breath like the Grinch that stole my Christmas spirit. Dystonia. Bah. Humbug.
© Mum Making Lemonade | All rights reserved.