For those of you following my blogs I am sorry its been a while, unfortunately the reason behind my lack of communication is Toby's deterioration....... Having not been able to get rif of the last few blinks that were hindering they have in fact got worse, more myoclonic activity meaning he is forced forwards and consequently injuring himself .... I think Toby bumps himself more in a week than Hallie has in a lifetime (she's 7 this year and has had a few bumps herself!).
The Doctors doubled Tobys Epilim dose at night and want to double it again in the morning if no improvement........ I gave it a week and Toby just seems to be getting worse not better.
I hate that my word is not good enough, the thing about NHS care is budgets, timescales and statistics. The Dr's have to follow so many protocols before they try new things....... it took toby a year to get to stiripentol as its cost nhs £6000 a year to buy. Epilim has never shown to do much for Toby so why he's still on it I don't know!
So currently I feel deflated as we had come so close to 'normality', I also feel Isolated as even the professionals have cut me loose..... we see Dr Newton a week today and so here is hoping that he has some sort of plan.........
In an attempt to keep the blogs fairly positive i'm going to sign off now but I will keep you posted on Toby's progress.
Emma
