No smiles....!

[lourobert]

Its really sad at the momenthow my ds seems to be losing come of his skills, we were warned that IS can do and that they often do ome back- its so hard as I havent even had a proper smile out of him in weeks.

He starts on vigabatrin today and although all children respond differently to it Ive heard some posistve things so im just hoping that it beings lots of smiles my way....!

Its horrible as I feel like im sat hawk watching him-waiting waiting for him to do things......i drive myself insane sometimes!

[heartinthecountry]

Hi lourobert - I know exactly how you feel. My dd has IS and she lost her smile for a while. It used to make me so sad. It did come back though and now she couldn't be smilier. The key is getting those seizures under control and if you are starting on vigabatrin then hopefully it will work for you as well as it has for us. What dose are you starting on?

[anniebear]

Hiya

It is so horrible isn't it?

We didn't see Ellie Smile for 3 months when she was taken ill (Obviously she was ill due to the Meningitis ..the IS came later)

I remember vividly... we looked at her one day and we thought, her eyes looked like they were smiling! If you know what I mean!! She had a kinds of twinkle in them.

But her mouth couldn't quite do it. Then a few days later it slowly reached her mouth.....

was fantastic!

Hope you see some results with the vigabatrin, I am sure you will start to see some smiles

Has he still not had any seizures?