March 18, 2012

Cool, calm, and collected

Bertrand had a follow-up appointment for his CCTV EEG on March 9th. It has taken me a week to wrap my head around what transpired. The epileptologist, who I'd had such high hopes for, basically hadn't looked at the EEG, despite having 2 weeks to review it.

From what she glanced at before we walked in, Bertrand's EEG during sleep is significantly abnormal. He still has some myoclonus while awake too. She couldn't locate the episode (one our so-called looping seizures) that the nurses and doctor-on-call medicated him for. She was upset with the staff for giving Bertrand rescue medication because it prevented repeat seizures that night.

She actually asked me to act out the seizures, even though she'd been shown video of them at our first appointment with her, and then said, "I'll take your word on it." (WHAT?!) She proceeded to prescribe a high dose valium regimen--without her prescription pad, because she had lost it.

It's hard to put into words how deeply unimpressed I am with her professionalism, much less her competence.

We need an intervention.

Bertrand's medical team is not on the same page with us or even each other. Scheduling a meeting with his pediatrician to discuss our issues will be the first step.

Quality of life is our primary objective for Bertrand. I don't want to drug him for the sake of drugging him. There is a delicate balance necessary for seizure control. Too many seizures = no development. Too many drugs = no development. I got the impression that Bertrand was prescribed a treatment to get rid of me.

I want a doctor (to clarify: neurologist) who understands my son's case, his seizure types, his metabolic considerations, and his potential. I want a doctor who doesn't see my son as a waste of time. Better yet, I want a doctor who believes that my son has hope for a better life.

One that returns phone calls or emails would be nice too.


  1. There is no defense for that physician's behavior! I might put it in the reportable category but I also know the emotional expense of that kind of endeavor.

    You are not only the 3 C's in the title, you seem to have a plan. It's hard to put into words how much I admire you and your husband.

  2. Thank you, Barbara. :) The admiration is mutual!

    My husband is also for reporting the neurologists, but 1) I would be the one dealing with the fall out, and 2) Bertrand's care in our home state could be compromised further by doing so.

    I would hope that constructive discussion with another doctor serving as our advocate will help. :)

  3. Oh Cristina! Since you're so very cool, calm, and collected, I'll be outraged and downcast for you. :( More admiration from over here.

  4. Grrr. Our job is hard enough. It's frustrating (and maybe occasionally depressing?!) to think about how much extra work we end up doing because other people don't do THEIR jobs. Fingers crossed for a helpful meeting with the pediatrician.

  5. Grrrrrrrrrrrr. No chance of Matt getting poached from the UofU by some university elsewhere---say, Cleveland? Baltimore? It pains me to say it because I love Utah, but is a move for the sake of B an option? Niki did it, and to a small extent we did too. :( -Ashley

  6. Thanks, ladies. Your support means a lot. I had to rage for almost a week before I could see straight.

    Ashley - my first reaction was wanting to move! But Bertrand's pediatrician, gastroenterologist, ophthalmologist, and geneticist are all fantastic. If we move for a new neurologist, it's very likely he'd be let down by one of his other specialists elsewhere. Because no hospital is perfect--although Cleveland Clinic is awfully close to it! :)

    'Sides, someone has to fight the fight here to fix things so you and Niki can move back some day. ;)

  7. oh gosh Cristina...I am SO sorry...I feel RAGE for you!!! I've been thinking about writing a letter to "one" of the 3 neuros we used to see at PMCH just to let her know how horrible she made me feel and how she didn't even want to hear what I was saying or what I thought & made me feel like some crazy person! ...I've been thinking about it a lot...and now your post makes me want to do write one even more! ...the "one" I'm referring to is "Dr.S"...I'm thinking it might be the same dr?

  8. Sarah - You are a psychic. By the way, how is that Cleveland Clinic/PCMC collaboration coming? :)

  9. Sarah - You are a psychic. By the way, how is that Cleveland Clinic/PCMC collaboration coming? :)