Got my boy back!

Well, so much has happened since my last post! I have changed his consultant from dr yeung to dr wildig, although not seen her yet. Archster has neuro appointment in march with dr ferrie. He advised archster go back on vigabatrin and half the dose of topiramate. By halving it, we saw instant improvements! He got his appetite back and not so sleepy. He able to play again. Going up on vig by 1ml each week. Currently on 3ml bd. seizures pretty much under control and his personality is back!! Finally he is enjoying life again!! EEG results showed slight improvement! Looks like he needs the vig to control his seizures. I joined infantile spasms forum and many parents find vig the wonder drug and their kids on it long term.

Archster has learnt how to use interactive device for bubble tube! Little star!! He picked it up instantly, pressing buttons with two fingers at right pressure to change colours and turn bubbles on and off. It's his new favourite thing!!