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)

19th June 2012

Today I was sat on pins waiting for his consultant to ring.

Aydan was not himself for hours this morning, he just spent the time sitting in his pram watching me do housework, which is not like him at all :0(

During his dinner he had a 5 minute absence, so after dinner I decided to ring the ward.

I managed to speak to his consultant today, and he has asked to see me tomorrow morning to have a proper talk about what is going on. I just hope he believes me!

At least I have the videos to show him.

18th June 2012

Today we had another absence, he also is struggling to sit up on this one.

I rang the ward to try and speak to his consultant but he wasn't working, so they have left him a message and they are going to get him to ring me tomorrow.

16th June 2012

Today was Aydan's nanny's birthday, so we all went to visit her.

Firstly he emptied her paper bin out all over the floor, but then he started to do this 

It looks like he is having some kind of sensory overload? He did it for about half an hour in total, he would get distracted by something, but a few seconds later go back to doing it! I can only assume that he either liked the feel of the fabric, or he was getting over tired, but because of the hand stimming, rocking, head banging and finger clicking that he's slowly started developing over the past few months, that it is starting to look more and  more like he has autism.

I will mention these video's to his consultant when I next see him.

Again today he has also had what looks like another absent seizure, and again this lasted for around half an hour. I have 2 videos of this, and you can see on the last one that he starts to come round from it at the end.

15th June 2012

Tonight we started with what looks like another type of seizure, although I wasn't sure, but recorded it anyway.

At first I thought that he was just really tired, so I put him in his bouncer and gave him a bottle. He would look at me, but it was like he was looking through me rather than at me.

About half an hour later he just suddenly snapped out of it and grabbed the nearest toy to him and was squealing in delight, just like he normally does!

I rang the ward and managed to speak to his consultant, he said that because he has started on a higher dose of medicine to wait until at least Monday to see if that helps.

This is the video

14th June 2012

Thought I would include some video's I've taken over the past week of him having these odd twitches

It's really hard to see as my hand isn't the steadiest

13th June 2012

Managed to speak to Aydan's consultant today, I discussed the random twitching he's been doing lately that reminds me of drinking too much caffeine and he has asked me to put his medicine up to 2.5mls twice a day as a start.

He said that it could be because Aydan has put on weight and he isn't getting quite enough medicine for his body weight now, so he suggested putting it up by 0.5mls to see how he goes on.

I mentioned the fact that Aydan has also had constant loose stools lately and that he's exploding out of his nappy, at least twice a day, and did he think it was connected with the medicine? He said that it could be, but for now I've got to do the whole pot and wooden stick thing and take it to the doctors for sampling to rule out anything sinister!

Oh joy!! Lol

So I have started him on the higher dose of medicine tonight and I hope we get some results quickly.

In the mean time I'm cutting down on his wheat intake to see whether that improves his exploda nappy situation! Just something I'm trying myself, not something I've been asked to try!

10th June 2012

One of my friends has just pointed me in the direction of this diet!

It looks very interesting and certainly needs considering and discussing with his consultant :0)

http://en.m.wikipedia.org/wiki/Ketogenic_diet

29th May 2012

Aydan had his first seizure/spasms in a long while tonight. He was flat out asleep and woke up screaming!

He looked so terrified the poor little man, but he hasn't had one for a while so its likely he's forgotten what they feel like!

He screamed intermittently for about 5 minutes, stopping when he was having a spasm, then screaming again, until they calmed down enough for them to still upset him, but not as much!

The seizure lasted for approximately 11 minutes, but soon went back to sleep!

I presume he had that one because he had gotten too hot and sweaty, he also needs his medicine dose upping because he has put on weight since they started giving it him.

28th May 2012

Aydan ended up going into hospital for a bit today because the chemist failed to get him his medicine in, after a weeks notice, so he had to have some out of their emergency supply cupboard! I wasn't happy at all with the chemist, to say the least!

Whilst I was there I mentioned Aydan's jittering that he's been doing lately, which reminds me a bit of drinking too much caffeine! These episode sometimes last for 5 minutes, when he is awake or asleep. He also gets random flinching from his head and limbs throughout the day. The consultant said it sounds like he needs his medicine dose upping, and that he's possibly having a different type of seizure, and might need more medicine, but Aydan's consultant is away on holiday for 2 weeks so they won't do anything until he gets back!

I also mentioned the fact that he still wakes up 5/6 times throughout the night, but they haven't commented on that.