April 1, 2011

A rant on medication...

Bertrand's seizure medication levels are as follows:
  • Lamictal level is 10.6 (effective range: 3.0-14.0) @75mg.
    • I would like the Lamictal held steady.
  • Depakote level is 28.3 (effective range: 50.0-125.0) @125mg. Now @250mg.
    • I would like an additional 125mg before bed to decrease sleep-related clusters.
  • Keppra level is 26.9 (effective range: 5.0-45.0) @800mg.
    • I would like to eventually wean Keppra to decrease sleepiness and rage.
Bertrand's neurologist made a BIG DEAL about the caution needed with medications such as lamictal and depokote, which are metabolized in the liver. In fact for close 2 years, Bertrand wasn't put on these first-line epilepsy drugs because of this overwhelming concern for his liver.

His doctor emphasized the need for frequent lab draws and supplementation with carnitine (protects the liver) and vitamin D (because it binds with depakote/valproic acid) as a HUGE must, if we insisted on taking the risk of putting Bertrand on these medications!

So basically it is MY fault if anything goes wrong. Okay, fine. I'm risking my child. I am confident enough in my research and second opinion from Cleveland to take this risk. BUT, as far as the required precautions go, I CAN'T ORDER LABS OR WRITE PRESCRIPTIONS!!!

The past month has been nothing but radio silence from his neurologist. She is not responding to calls or emails.

Bertrand's labs need to be checked SOON! (It's been a month!) And he needs his depakote prescription increased! (He's having myoclonic clusters!) And his carnitine prescription is about to run out! (His liver! Remember!?)

Sure, Bertrand's liver has shown improvement as of late, but given that his neurologist hasn't even looked at his lab results SHE DOESN'T KNOW THAT! (Also, strong precautions, such as checking LFTs, CBCs, medication levels, carnatine & vitamin D levels, etc., are taken with patients whose livers are completely NORMAL!)

Hormones aside, I feel I am justified in being furious. My calls & emails go into a void when my child's life is at risk! And, every seizure he has could be exacerbating his brain damage.

I've been escalating my communication efforts, and trying different channels to reach her. If I don't hear anything on Monday, I may very well show up in person next week!


  1. Hey, this is Ashley. Can the doctors in Cleveland order the labs/prescriptions for you? They do it for us here in CA.

    You are amazing, as you know.

    Bertrand is handsome.

    Hope we get to see you soon.

  2. I think we had issues with that same dr....I was SO unimpressed with how she made me feel!! Etc etc. But, she fed my fire to go to Cleveland! You should try dr F. I was really impressed with him. Although I have a hard time getting a hold of him...but that's pmch for ya!