heartinthecountry.........!

[lourobert]

I totally forgot that I even started a thread until I checked today,just had so much going on. you say your lo had success with vigabatrin.....thats reassuring. Louis has only been on it for less than a week but first signs seem good. He is currently on 4.5mls a day.

How much is your little one on.....? I think I caught a smile over the weekend- I screamed for my mum to come check I wasnt imagining it. He seems 'different since on the vigabatrin...different in a good way although its made him sleepy.

I hope this works for him..!

How is your lo?

bump

Hi Lourobert - my dd is on 550mg twice a day - do you get it in liquid form? Do you know what it is in mg?

Dd has been on about the same dose since she was 6 months old. We have had to increase other medication but left the vigab constant.

All her meds used to make her sleepy at first but her body now metabolises them really well. She isn't any sleepier than any other 3 year old now.

With any luck your ds won't need to be on the vigab as long as dd. She is on it longer than usual as she has a syndrome which means she could always have IS whereas with most children they grow out of them by about age 2/3 anyway.

Glad you think it is beginning to work.

Ill have to have a look at what it is in mg....as Im unsure. it is in powder form and I think the packets are 500mg although couldnt be sure of that. Ithink im seeing some improvements already. My mum has him today and has just sent me a text of him with a huge smile on his face....so fingers crossed.....!