Skip to main content

I love Dr. Neuro...

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!


**********************************************************
Oh...and btw...Bristel's down for the count. Fever. Mouth Sores. Cranky. Clingy.

so goes another round of

Hand Foot & Mouth
I wonder who'll be next.....

Comments

Mama Skates said…
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!
Jonathan said…
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
JSmith5780 said…
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!
labonte4 said…
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
Danielle said…
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

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...

it ain't sexy livin' on an island...

Especially when you have to cross bridges to get ANYWHERE. Very LARGE bridges. The crests of which I inevitably get stuck at. Speaking of...why is it that at the tippity tops of our bridges...the railings always open up? To reveal an eagle's eye view of the white capped depths below? I HATE that. And sure enough...in route to Dr. Pedi yesterday...they must have seen me coming cause traffic ground to a halt at the top of the Mt. Hope Bridge. Where I felt less than Hope-ish. My palms gushing my nerves onto the steering wheel for a good 15 (felt like forever) minutes. Not just things medical bring out my cowardly lion. Heights do too! Anyway... Grabbed an iced coffee and chocolate cream filled to settle my nerves on the way. And we arrived on time...in one piece. Of course. Dr. Sick-Visit-Pedi breezed in chart in hand. Glanced down. Then at Trevy. Then said... "He has a history of Infantile Spasms?" Surprise and speculation in her voice. We get that a lot. It...