So we went in for our forever dreaded routine neuro appointment. They are so routine that Brandon doesn't even go with us anymore. It started out with Brandon going to all the appointments with us...to just getting conference in via speakerphone...to just getting a recap when he gets home from work. They all go something like this...
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 :(
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 :(
3 comments:
wow...you must be exhausted! Neuro appts are emotionally exhausting enough...without all the other things added in.
Finding a neurologist is hard. I'm sorry that your's sounds like a jerk...but glad that he's willing to work with you. And on the other side...how awesome that you got a call from the other neuro!
I'll be praying alongside you for Sophie. When do you start?
(((hugs)))
...danielle
Hope this round of ACTH offers her even more relief than the last one. See all of you soon. Her cousins from KC are really anxious to see her and her sister.
Love,
Barb
I'm guessing you spoke with Dr. Chugani in Detroit? I've heard good things about him and that he's very willing to talk to any IS parents that might have questions. I know what you're saying about the more meds they fail, the less likely they are to get seizure free on the next one. We've heard the same thing from our neuro. But the thing is...some kids have to try upwards of 15meds...but EVENTUALLY something works. I'm not willing to give up and I don't think you should either. I'm so impressed at how well Sophie is doing inspite of all of the seizures...she's somehow managing to beat the odds! Take care and Sophie (and your family) are in my prayers!!
Tera
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