Monday, August 15, 2011

In The Weeds

As a former waitress, when things were starting to spiral out of control, you'd say that you were "in the weeds." If you were lucky, coworkers would help out until you were in a more comfortable place.

We're on week three of Sadie's ACTH treatment. While the steroid seems to have gotten Sadie out of her every-five-minute-seizure-pattern, she is still "in the weeds." We've gone from seizures every five minutes to seizures every fifteen minutes - still not a great place to be. You know things are bad when medical professionals (epileptologists, even) look at you in amazement when you tell them the number and duration of seizures she has, as well as the numerous medicines and treatments she is on.

We've started making some slow changes with her medicines. We're finally starting to wean her off of Vigabatrin - a medicine she's been on now for a year. The jury has always been out on Vigabatrin. We initially thought it was making things worse, then after a few weeks, she got better...but she had also started the ketogenic diet around the same time. Of the four seizure medicines she is currently on, Vigabatrin has the most severe side effect - potential vision loss - and with Sadie's existing vision impairment in her right eye, it's the logical choice to start weaning first.

On a parallel track, we've also started testing to determine whether Sadie is a candidate for brain surgery. After talking with few other parents of children who have undergone hemispherectomies, we've started an initial conversation with Cleveland Clinic, who has a great epilepsy center and neurosurgeon who specializes in the surgical procedure.

In Sadie's situation, we have epileptologists, pediatricians, dietitians - all helping to get Sadie out of "the weeds." But no matter how hard we tug, we just can't seem to get her to where she needs to be. We'll simply keep trying.


  1. Dear Cathy (and of course Adin & Sadie!),
    I so wish I could give you and your brave family hugs. As a new mom myself, Sadie's story always reminds me how precious life is. Sadie is beautiful and so lucky to have you as her perfect mommy. The three of you are always in my thoughts and prayers!
    Katherine (Hall) Reed

  2. "Weeds are nature's graffiti." ~Janice Maeditere

    I don't know about you, but I've always been drawn to graffiti, especially in Europe....xo

    Please keep me/us posted on the Cleveland Clinic option (would you be coming to Ohio or is there a location in Chicago?). Just know I'm always rooting for you guys and constantly sending love, hope, prayers, good wishes, etc.

  3. Miss you dearly. Sending love and hugs always.