Friday, January 25, 2008

Update on Emily's ACTH Treatment

As we were starting the final wean of Emily's medication last week, her spasms starting breaking through again. She had even gone 36 hours with no spasms and one day with only one single spasm. I really thought they were under control.

Unfortunately, they came back quickly and frequently. We have increased her ACTH dose twice now and added Topamax as well, and she is having an average of 100 spasms a day over the last five days! [The date on this post is actually correct! :)] She is having less intense spasms, we are even calling them mini-spasms, because she doesn't cry after every one and physically it is just a small jerk. It's very frustrating and we are concerned. But there are other medications we can try and we can continue the ACTH at the high dose and hopefully see an improvement again over time. But each day the spasms continue, it's hard to be patient enough to find what will work for good.

Emily is so tough and only barely cries when she gets her injection each morning. We haven't seen a smile for a few days now, but she is continuing to make eye contact and is starting to follow objects and people with her eyes. What a good girl!!


KRISTA said...

Aimee-Wow--you really made up for lost time on your blog! I love reading all the updates. I sure hope that with experienced medical staff and state of the art medicine, Em is able to get some relief. She is precious! I love the lip smacking too with the rice cereal! Ella does that too. Nick has also found his feet--and hands. If he's really on his A game, he can take his socks off! Big hugs to you & your kiddos!

Heather said...

Hey Aimee! I hope Emily's doing ok! You're a wanted woman on BBC right now ;-)