May 28, 2012

Valium Protocol - Failure to Launch?

Bertrand battles a possible UTI as well as seizures.
As mentioned way back when, Bertrand was to undergo the Valium (aka Riviello) Protocol.

Maddeningly, the neurology team at our hospital fumbled his admission for months.

So, the head of pediatric neurology decided to oversee Bertrand's initiation himself.

This afternoon, Bertrand was finally admitted for the procedure.

And promptly developed a fever and possible infection.

He is currently being evaluated for strep and UTI.

Depending on Bertrand's condition tomorrow, the protocol could be halted before it even began.

Seeing Bertrand sick is sad, but the thought of months more seizures is heartbreaking.  :'(

Here's hoping our little buddy gets well soon.


  1. Cristina, I got a bit caught up with things here (nothing spectacular, just acclimatizing to juggling three kidlets) and just recently saw the news from the last few weeks. I can't even come up with words. I want to say "Congratulations!" since it must be so wonderful to finally have an answer, but then I remembered that an answer doesn't necessarily mean a solution, but a different sort of problem. I'm so glad that N-glycanase is at least in existence even though there's red tape to getting at it, and I hope so much for all of you that you can both start it soon and find other families who can start it with you. And in the shorter term, that B can start the Valium protocol as soon as possible!

    Daniel asked who I was writing to and I said it was to you, and he said he hopes Bertrand still gets to see Teacher Christina :). All our love from Seattle.

  2. I am so sorry to hear about B not feeling good. I hope he gets better soon. I still miss him a lot! Sending good vibes and Love
    -Miss Liz