Neuro: What medications is she still on and what is the dosage?
Me: blah, blah, blah (update with her ever-changing medication schedule)
Neuro: How are her seizures?
Me: She is STILL having daily seizures. They are the worst when she wakes up in the morning.
Me: What do we try next?
Neuro: In so many words...It really doesn't matter what we try next because since she has failed so many medications that there is a very slim chance anything will work and if anything does work then it probably is only a matter of time before they come back.
Me: Well, then what has the least effect on her cognition because her development is INCREDIBLE right now. Then I go down the whole list of all the new things she is doing.
Neuro: No reaction. NOTHING, NADA, ZILCH.
Neuro: We can try... (fill in with yet another medication to try).
Me: Okay. Thanks for your time.
Some might wonder why we stick with this neuro but he has been with us since day 1. Even though he is not Mr. Personality, I still like him. He has always been open to any suggestions I might have and he is always willing to consult with other neuros. Not to mention that he is a pediatric neurologist...not an easy title to earn.
So what makes this appointment different than the rest is as follows...
I occasionally keep in contact with the neuro in Detroit that specializes in Infantile Spasms via e-mail. Well, this time he responded to my e-mail with a phone call. So I went through Sophie's history of medications and treatments we have tried since we last saw him and he suggested a second round of ACTH. Yes, that is right...a second round of ACTH!!! Ugh!!! The side effects to her body are hard to watch but this was the most successful drug she has been on. This was the closest to her becoming seizure-free from any drug (we still do not know why she was seizure-free for 33 days back in December 2007/January 2008).
So I mentioned this to her neuro during her last appointment. He called the neuro in Detroit. All is in agreement that Sophie should do a second round of ACTH. So that is what we are going to do. We will be starting the treatment in the next couple of weeks. Everything has been approved by insurance which is huge considering each vial is about $23,000 and she will probably go through 5 vials while on this treatment. The cost is insane - right?!?! The cost of ACTH during Sophie's first round of treatment was about $2,000 a vial.
So, that about sums up our last appointment. The appointments are a necessary evil...always leaving with an overwhelming feeling of something that I can never quite pinpoint but it is never good. How can it be good??? Sophie is still having seizures :(