Williams seizures have increased. A lot. He was having about 4 or 5 a day but recently he's had 11 just at nursery and he's only there for 3 hours! So it's more like 20-25 a day which is really scary.
We've seen the paediatrician and his medications have been increased but that's not made any difference at all. So the next step is steroids but that has no guarantee of getting on top of them. So today we are off to Haywards Heath to have a sleep EEG. William will be given melatonin which is a hormone type drug which will send him to sleep and then lots of tiny electrical wires will be stuck onto his head to measure his brainwaves!
Once we've got the results of that the doctors can see whether anything has changed since his last one and they'll know how much steroids he needs!
Luckily he hasn't had a big one recently but the little ones although they don't look scary actually scare the hell out of us as we don't know what damage it is causing to his brain. He's started to become really upset after them now which isn't nice either.
Williams seizures aren't typical like the ones we all see on the TV where the person is convulsing on the floor. They are strange to see and most people don't notice them, apart from friends and family who have seen them before and people who understand epilepsy!
His head turns to one side and drops down and his arms fling out to the side - sometimes his eyes twitch, sometimes his head twitches, sometimes he makes groaning sounds, sometimes he laughs and sometimes he cries. The main thing is that his body, which is usually so stiff, goes completely floppy and his arms are so stiff you can't bend them, his head locks in place and there is nothing you can do to move it. Sometimes he is still with you in that he will make eye contact and follow you if you move but other times he is away with the fairies somewhere we would never know of. It's scary.
There are no specific triggers. He can have them when he's happy, when he's sad, when he's tried, when he's alert etc etc. He even has them in his sleep now which isn't great and makes him scream the place down.
We've seen them so many times now that we try to make light of them when there are people about so as not to scare them too.
Anyway, hopefully today's EEG will give us some answers about where to go next and maybe we may be able to take control of them at some point and give William a break from them.
If anyone has any magic spells to stop them please let us know!!
On a lighter note. The auction and wine tasting went really well. We raised an amazing £2400 at the auction which is just brilliant! Our next Facebook auction starts this weekend (Saturday) so take a look www.Facebook.com/pleasehelpustohelpwilliam.
People are always asking me where I get the enthusiasm for all this fundraising and organising things and it's simple. The more time I spend thinking about things like that, the less time I have to think about the seizures, the tests, the drugs, the Physio and of course the future.
Xx
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