Well poor Elin is suffering with the evil, nasty, hateful, horrid affliction 'Dystonia' again at the moment. Just like last time, we watched helplessly as a switch seemed to flick off in her brain (it really is as quick as that) and she became too stiff and spasm'y to do anything at all other than be held and cuddled. Thursday was just about manageable with continual holding and regular changes of position. But by friday the Dystonia was off the scale again, just like a fortnight ago. She required her rescue medication at school, slept for hours then proceeded to wake up and continue to be gripped by Dystonia's powerful and unforgiving claws. We went to Children's Ward, knowing we were unable to give her a second dose of the rescue medication without medical supervision. She was given a second dose and mercifully the dystonic spasms cut out immediately. The registrar gave us instruction to up her Diazepam (again) with the only problem being that Diazepam is notoriously easy for the body to build a tolerance to, therefore basically rendering it ineffective. Elin has been on Diazepam for 20 months and I wonder if this has happened with her. For now we have to keep cranking it up until she is on the highest dose, then we can move forward from there.
We got home last night from the Ward and Elin had a good night's sleep (probably a side effect of the double-dose of strong meds). However this morning it wasn't too long before we observed the familiar dystonic movements. By this afternoon they were becoming increasingly strong and regular. The only way we have managed to calm her and stop the spasms currently is by lying her flat on the hard wooden floor (with a mat under her I hasten to add) where she now is fairly happily batting away at her chime -about toy and kicking her legs slowly in a very natural and 'normal for Elin' way. I have no idea why lying her out on a flat surface helps her, but it has done time and again. The inability to understand this dreadful part of her condition is hugely upsetting and frustrating for us as parents. No triggers, no pattern, no rhyme, no reason. No ability to help her. Just hoping it will go away again, or that an increase in meds will work (Im not convinced). Seeing her like this is incredibly difficult and exhausting both physically and emotionally. I can't imagine how it's making Elin feel (and if Im honest I don't want to imagine it).
For now I guess we have to manage this as best we can, whilst we keep our fingers crossed for a speedy response from Alder Hey's movement disorder clinic. Taking things day by day is something I've never been very good at, I like a plan (and I like the plan to work!) . I'm just not a 'see what happens' or 'go with the flow' kind of person. I'm a planner. I like to know what's what. My calendar is run with military precision, I never miss anything, I am never late, I never forget anything. I like to have answers to my questions and reasons for everything, especially where Elin is concerned. I'd love to be all bohemian and relaxed about everything in life but I'm just not. It's not very cool, but it's just how I am. However I'm learning that I don't really have a choice in this matter so sucking it up and getting on with it is the only option. (Yes, I'm still learning this after six years! It's a slow process, changing the habit of a lifetime!) So it's deep breaths and 'see what tomorrow' brings time whilst we silently pray that the evil Dystonia leaves our baby girl alone, because seeing her suffering and not being able to help is by far the single worst thing we have to deal with in this circus that is Cerebral Palsy. Pfft. Send in the clowns. :-( :-(