Saturday 19 May 2012

Worried mummy

So I have not blogged for a while. Archster has been doing well overall. He is currently on 600mg vig am and 550mg pm plus epilim 6ml bd. At the weekend he was admitted to hospital. He woke up Saturday morning and seemed to be having constant seizures, a combination of drop attacks, absences and focal motor. He also has started doing new seizure like movements, pushing his tongue out, flicking his left wrist?? This cluster lasted about 3 minutes. Dr wanted to give him midazolam which is emergency epilepsy drug to stop the cycle. He picked up during the afternoon so he never got the drug. We discharged him even though they wanted to keep him in for monitoring.on Monday tea time the same thing happened again. I rung paa and they said if it happens again to bring him in. Despite these two clusters he is still having a lot of seizures. Dr wildig advised us to go to the max of vig 600mg bd which we will do tonight. I do know lots of kids on infantile spasms forum that are on much bigger doses of vig, however, I also read that if it is symptomatic, which archsters is, then vig is not the answer long term. I am desperately chasing the referral for keto diet as think this may be a good option for archster. He has MRI on 1st June to see if surgery is an option. in the meantime, I am stressed to the max, desperate to give up work but can't afford to and praying for a successful outcome of court case soon!!

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