Hanging in there

The optimism of last week has worn off a little and we are just trying to get through the days until we get more answers.  Unfortunately, the doctors at UNC were not able to find the evidence they wanted on Maddie’s EEG from Charlotte, so we have to go up to UNC for another EEG.

We started the new medicine right away but ended up discontinuing it very soon because her seizure frequency and intensity increased dramatically the day we started it. Now we know that was probably a coincidence, as seizure meds rarely do anything quickly. Instead, the cause of the more frequent activity was likely a change from a brand name drug to the generic form. Lesson learned: never do anything because your insurance company thinks it is best. We restarted the brand name seizure medicine Tuesday and are waiting to see improvement. She is currently having seizures around the clock again, which means sleeping is a problem, but more importantly, she has barely recovered from the last seizure when the next one comes on.

We have a hospitalization at UNC scheduled for Feb 26th to do the next EEG and to try to determine once and for all what is going on. We are hoping to move it up to the coming week, because we want to get answers and so it does not interfere with her current chemotherapy schedule for the week of the 26th.

Please keep Maddie in your prayers.

Happy late Valentines Day too!

Love to everyone,

Liz, Brandon, and Maddie

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4 thoughts on “Hanging in there

  1. We are still praying for Maddie and for you and Daddy. Give her big hugs for us.
    All our Love,
    Richard, Gina, Shelby and Charley Price

  2. Ugh, I’m so sorry Liz. I was hoping for better days. A note about generic seizure meds…they are bad. David’s pharmacy suggested using a generic drug and within a week he had one of the scariest seizures I’ve ever witnessed.
    I hope you can get that EEG moved up. Hang in there.
    Much love,
    Sarah

  3. Liz,
    Sending big hugs to you and Maddie, I think of Maddie a lot. Keeping you all in my prayers and praying for better days ahead.
    Love,
    Zanna

  4. You are in my prayers every day. I can only imagine your anguish. Good for you for pushing for answers … Maddie is truly blessed to have you for her Mommy ….
    Love to you all!
    Kathy (Julia’s Mom)

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