Elin is back on a 'good cycle' of Dystonia, which has been highly predictable since Monday was our long-awaited appointment with the movement disorder clinic at Alder Hey. She sat beautifully in her chair in front of the Consultant, smiling, batting her eyelids and generally emitting "definitely no movement disorder to see here folks, move along" vibes. Grrr. Madam. Luckily for us the Consultant, being an expert, did not really need to see her having a bad day as he knew exactly what we were talking about. It was really reassuring to chat to an expert int he field, as dystonia is such a complex condition that there aren't many experts around, especially not locally. It affects each child completely differently too, which makes assessment and treatment obviously extremely difficult. We had answers to some questions that had been bothering us (yes, this is common in children with HIE Grade 3 brain damage. Yes, the manifestation of not being able to sit in a chair of any description is common. No, we don't know why sitting triggers dystonia. Yes, often dystonia comes in cycles and repeating patterns. No, nobody has yet worked out why. Yes, there are plenty of medications we can try, no the cannabis trial is not for dystonia. Yes, DBS can be effective in children even with secondary dystonia like Elin. Yes, dystonia can get ten times worse than this. No, we cannot be sure she is still having epileptic fits etc etc etc) and have formulated a basic treatment plan using Diazepam, a drug she is already on, to combat the 'bad weeks' by increasing it only when necessary. Quite how this is going to work yet we are unsure, it will be easy to identify times for the medication to increase but how will we know when to decrease it again? 'Playing it by ear' has become our middle name. If THAT then doesn't work, there are other medications we can try. We also talked about an intrathecal baclofen pump, which sits under the skin and slowly pumps baclofen (which she already takes through her tube 4 times a day) into her system to try and combat the spasms. Im not keen on that, my research suggests a high risk of infection which was confirmed by the Consultant, but then conversely it has also had a really positive impact on some kids. Hmmmmmmmm.
I will have to keep you updated on the courses of action and how we get on. We are praying that something works, as seeing Elin's quality of life so rapidly deteriorate for days at a time can really take it's toll not only on her of course, but on us, too. I can cope with almost anything whilst I think Elin is happy but when she isn't -well, just imagine it was your child squirming and spasming 24/7 for regular periods of time while you watched on, helpless, and you get the gist.
In the meantime I will leave you with this video, taken on the day we went to Alder Hey- like I said- what movement disorder????? Madam!! G'night folks.