So Evan has epilepsy, as I am sure you have realised by now! He has been having lots of seizures and they are increasing every year. So far this year to date he has had 50, a number not to joke about. It averages out to around 5 a month. To make Evan's more dangerous he also has clusters of seizures, this is 2 or more seizures with small amounts of time between them. It gives the body no time to repair and re-set, so it increases sudden epilepsy death syndrome (SUDEP)
It's believed that around 500 deaths each year are caused by SUDEP in the UK alone, so it's no joking matter and with Evan's high risk we needed to try and get this epilepsy under control. So we have been refereed to Dr Ernest Somerville who is head of the epilepsy centre at Prince of Wales Hospital.
As soon as they had seen Evan they knew he had a bad case and that all the allergic reactions to medications hasn't been helping, resulting in poor treatment of his condition. They wanted to send us to hospital for a week for a VEEG. A video EEG that tracks the brain 24 hours a day and would capture any seizures he had. Evan was very nervous about this and really didn't want to go...
As a result of the stress and worry he had 4 seizures the day we had to go for the VEEG. He was hospitalised and then later transported by ambulance from our local area to the hospital in Sydney. Poor thing was really sick and unfortunately they didn't catch any seizures with the EEG. We spent the week in hospital with no action, but we did get a new medication to stop any clusters in the future and also we are starting to increase the current medication levels. {In the bast he has lost his vision from this so it will be very slowly over months and months}
It feels good to be getting results & help from skilled specialists, but I think I was hoping they could see the seizure and magically fix him! I guess only time will tell how he goes.
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