November 29, 2011

big day.

Today is the day. I was given the "ok" yesterday to start weaning Pin off topomax, a med she has been on since June 2010. We are beyond thrilled and I'm really nervous. We want her to remain stable as her meds decrease. Six pills, dropping one a week, over six weeks. This is the best Christmas gift we could ever receive.

Please pray she will continue to be seizure-free and that development will blossom after the removal of this med. Her neurologist calls it "dopomax," as it calms and slows EVERYTHING in her body. It effects balance (she is 19 months and still not independently sitting), taste, etc...

Thanks for caring for us. I will keep you posted.


  1. I don't think I've ever commented before, but I've been following Pinny's story and praying for her for a long time. I have been on Topomax off and on for about 3 years to treat chronic migraines. I am so excited for Pinny to be coming off of it! I think you will see a big improvement! Even as an adult I notice that it is harder for me to follow conversations or find the word I'm looking for at times. Many prayers to you!
    Lisa- Annie Menconi Montgomery's sister in law

  2. Lisa-

    You are so precious to not only read and follow our story, but actually encourage me. I so appreciate your kind words and openness with sharing your topomax experience. I have heard similar stories from friends. Pinny is not a great eater either and I know some of the side effects are metallic taste, lack of appetite, etc. I covet your prayers and am humbled by your love for us.

    I am sorry to hear about your migraines. I can't relate but I know many people who suffer from them and they can be life-stopping. Praying for better days for you, too.

    Much love-

    p.s. I love Annie and Stew! I only wish we lived closer so we could "do life" with them. She is a fun, spunky girl. Just my kind :)