20th June 2012

Today we got to the ward nice and early, but we still had a bit of a wait on our hands because there was an emergency going on.

Aydan typically fell asleep 5 minutes before his consultant came to speak to us, but it didn't really matter.

We discussed what had been happening, and I showed him the videos. He agreed with me that it wasn't normal child behaviour so he rang Alder Hey to speak to his consultant there. 

When he came back the conclusion was that they are going to up his vigabatrin from 2.5mls twice a day, to 6mls twice a day, over the next 2-3 weeks. They don't really want to start him on another medicine, or change it, until they have tried this one fully. Apparently he can have up to 9mls a day for his weight, so they will still have a bit of room to play if need be!

I also mentioned Aydan's loose stools again, and he is getting referred to a dietitian now which is good.

I have also mentioned Aydan's increasing signs of autism, and his consultant doesn't know much about autism so is going to refer him to someone to look at that too! 

I'm feeling much more happier now that I have got to actually see his consultant and talk things through properly, I'm just now keeping my fingers crossed that upping his medicine will now work for both types of seizures.

I haven't been doing too well with Aydan't wheat/gluten free diet, it's a good job that he hasn't been asked to do it properly yet, but we're all still learning! Both daddy and myself have forgotten and given him a bit of sandwich :0S his sister gave him a cheese biscuit, and I slipped up and gave him some chocolate! Who'd have thought that it would be hiding in there?!! SNEAKY!!!

I have received a gluten free cook book today, and I have decided that I'm going to slowly switch all of us to this diet, because then if we forget he will only have the gluten free stuff off us anyway! lol!!! plus it will be interesting to see how it affects my IBS that I have had for 20 odd years.

On a much happier note, I have caught Aydan free standing a couple of times, so am keeping my fingers crossed that it wont be long till he can walk! I want him to prove them all wrong, and that he will walk!! :0)