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.....
5 comments:
great news on the neuro...horrible news about bristel! so sorry sweets - hopefully it will be a little easier since she's older...but regardless, i know how hard it is to see ur child in misery & u can't do much to help!
She's actually been doing great! There've been moments of crying & just wanting me to hold her. But honestly, she's so darn cute when she's sick!
lol
...danielle
If his activity is all focused on the left Boston should be willing to do Phase I surgical testing. We were there for four days I believe. Day 1- BEAM, Day 2- PET, Day 3- Ictal SPECT and Day 4- Interictal SPECT. There was also an MRI in there somewhere and he was on VEEG the entire time. It wasn't an easy week (esp because I was nursing Ben and Connor who were 4 months and at the hotel next door with my mom) but we confirmed that Austin was NOT a surgical candidate and that his brain lesion was not a focal point (at that time).
Hope Bristel is feeling better soon!
Weird how PET is like a swear word at the CNDC! I've had a bit more of a struggle with Ava, as she has always been multi-focal, and hasn't "lost" any milestones. I guess sometimes they want to see you in the worst case scenario before they give you what you need.
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
Jen - I think much of the issue is our insurance is based in RI & they're very slow to approve anything that can be done here. BEAM can't...thus the Boston trip.
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
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