After my chat with the neurologist (in which I blubbed and told him I didn't mean to offend him or question his expertise, I just wanted to fight for Hallie and ensure she was looked after properly) he apologised and said he had actually treated SWS patients before which made me feel a lot better. He agreed to treat after 5mins of a seizure starting instead of 20mins, which was concerning me. But only as a one off treatment and not repeatedly every time she had a seizure in clusters as this could send her into a deep sleep and affect her breathing.
So, Hallie was given another loading dose of sodium valproate and had her carbemazepine medication increased. The neurologist told me he was increasing Hallie's carbemazepine much faster than he normally would to try and get on top of the seizures.
Hallie's last seizure was 8.30am Thursday 20th - fingers and toes crossed (words of the neurologist) that the seizures are under control for now and Hallie can go home for her christening on Sunday and of course have her first Christmas at home!
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