because she's SO accessible!
She emailed to let me know that she has gotten approval (yes, the ever on-going insurance battle) for Trevor's BEAM study in Boston. Each EEG Trevor has shows more activity popping up...all focalized in his left hemisphere. I wanted a PET scan based on advice from Dr. Harry Chugani - a well known & respected pedi neurologist who makes himself available via email for parents dealing with IS. But for whatever reason the neuros here are slow to move forward with PETs? I know other IS parents from the same clinic have hit the same wall. It's frustrating when you're on The Hunt...my nick for the journey we're on to find the under-lying cause for Trevor's IS.
Dr. Neuro...who has expressed her concern given Trevor's continuous abnormal EEG patterns...was able to push for a compromise! And so perhaps June will provide us with more answers?
I wish more neuros were as accessible!
She's also setting us up with a 2nd opinion. With her mentor. Because she wants to make sure we're doing everything we can for Trevy!
And...seriously...I LOVE that!
No such thing as too much championing in my book!
**********************************************************
She emailed to let me know that she has gotten approval (yes, the ever on-going insurance battle) for Trevor's BEAM study in Boston. Each EEG Trevor has shows more activity popping up...all focalized in his left hemisphere. I wanted a PET scan based on advice from Dr. Harry Chugani - a well known & respected pedi neurologist who makes himself available via email for parents dealing with IS. But for whatever reason the neuros here are slow to move forward with PETs? I know other IS parents from the same clinic have hit the same wall. It's frustrating when you're on The Hunt...my nick for the journey we're on to find the under-lying cause for Trevor's IS.
Dr. Neuro...who has expressed her concern given Trevor's continuous abnormal EEG patterns...was able to push for a compromise! And so perhaps June will provide us with more answers?
I wish more neuros were as accessible!
She's also setting us up with a 2nd opinion. With her mentor. Because she wants to make sure we're doing everything we can for Trevy!
And...seriously...I LOVE that!
No such thing as too much championing in my book!
**********************************************************
Oh...and btw...Bristel's down for the count. Fever. Mouth Sores. Cranky. Clingy.
so goes another round of
Hand Foot & Mouth
so goes another round of
Hand Foot & Mouth
I wonder who'll be next.....
Comments
lol
...danielle
Hope Bristel is feeling better soon!
For us, the testing is a double-edged sword. We want to know in case there is anything further we can do for her, but it seems that the things they suspect, not only have no cure, but wouldn't change our treatment plan.
Sorry about the book. I just woke up and am not feeling totally exhaused *LOL* my usual !
R
But maybe after our visit w/Duffy...he might have a different approach?
R - *rolling eyes* at the system here! That is almost verbatim what Dr. M said to me about worst case scenerio!
And I'm praying for wisdom with moving forward with the testing. You're right...it's like a do I really want to know place?
Anyway...
...danielle