Meds Update

Hiya, Sorry it's taken a while to update, I've been waiting to see if his new meds work so I had some definite news to report.

So, I took Patrick to see his neuro a week ago last Monday. When we arrived for the appointment he was fast asleep so I deliberately woke him up in the hope that he would have a seizure (sounds awful and I felt very guilty but it is always better if his neuro can see him fitting as it makes it easier to prescribe the right drugs). Thankfully he did have one of his bad seizures so she was able to get a good look at him close up and see that we weren't over exaggerating the severity. Anyway, Fiona has now introduced a new medication called Clobazam into the mix, he started off last week on a very low dose and it will be gradually increased over the next few weeks. I have to say though that within a few days on this medication his seizures have got better. Instead of having bad ones at any time for the past 4 days he has just had one during the day and one at night so that is a massive improvement. I don't want to tempt fate but yesterday and last night he didn't have any 'proper' seizures at all, just a few light jerks. If he carries on improving as the dose is increased we may get him seizure free which would be fantastic as he hasn't gone a full day without fitting for 6 months!
Not having seizures has a massive effect on his personality, yesterday he was in a great mood all day and when he's happy he's noisy! He is still limited in his communication but when he's happy he squeals with excitement at the top of his voice! He'll lie on his play mat kicking his legs and waving his arms and just makes noise. He does this at 6 o'clock in the morning when he wakes up but you can't feel grumpy with him, he sounds so happy to be awake you just can't help but smile, he's the best alarm clock I've ever had! There's no volume control with Patrick at all, he just does loud, you can't hush him as he doesn't understand that so yesterday in particular our house was full of noisy happy sounds, it was great!

Anyway, I've got to go take Isaac to school and start the busy day, will update more at the end of this week. xxxx