We have begun to wean ACTH. We are holding our breath, praying and crossing our fingers.
It will be a slow process, about a month.
Since being on ACTH Emily has definitely regressed in most areas. She does not open her eyes all the way, her cvi has really gotten worse,she stopped smiling and being happy in general, she does not tolerate ANYTHING, and her sleeping is still crappy.
The only things that got better are eating and seizure control. We still have not seen any seizures or spasms.
She has been doing a lot of grunting lately. We took her to the pediatrician just to make sure it is not something respiratory and it was not. They said it was seizures-HOWEVER- I can stop what she is doing and the rule of thumb is if you can stop the movement it is most likely NOT a seizure. I called her neuro and he agrees and we have an appointment on Tuesday. ACTH has so many side effect the grunting is probably just one of them. At least I am praying so.
We did see a smile two days ago! It was just one but she has had at least one per day since we began weaning.
|Loving this little grin!|
Please keep praying that the ACTH is working and will continue to work!