Anyway here is our ACTH story, Caitlin was almost 9 months when someone finally listened to us and sent us to a neuroligist. She had been having really long and hard spasms the entire time. They started her on Acth in the hospital and by that evening had no more spasms the entire time she stayed on ACTH (which I think was 2 months) She was fussy at first and did get very chubby(If you can imagine my skinny tall girl chubby) because it is a steroid. I look at the pictures and they don’t even look like her! Anyway, I never did regret using this drug because Caitlin still rolled and did ok besides being fussy. I did hate that it was short term and as soon as we discontinued the seizures did return! That was very disappointing!!! But just the short term seizure control I thought helped because she had nothing before that. You will hear many opinions from our wonderful panel of experts and I hope you take them all in to account.
Tracy