Quick Update

So I feel guilty even writing this quick post because I have been so lackadaisical about posting lately. Frankly, that has been because things have not been good. And while I can often find ways to sugarcoat things or find the positives to share….. lately, seizure-wise, that has been difficult. It has also been tough to find positives developmentally. She has been stuck in a rut, and I have even been questioning the value of school because there has been no forward motion whatsoever.

I promise to go into more detail later about all that she has been going through lately (lots of med changes). But the reason for posting now is that we are seeing some significant seizure improvement for the first time in a very long time. She has recently started a drug called Banzel that I really did not have a ton of hope for.  I know of one great outcome (seizure freedom!) from this drug (in an incredibly sweet little girl, Reagan) but otherwise the reviews have been pretty negative. Even our Neuro said he did not have much hope for it, but sadly, we have very few drugs left to try.

But we are having some very encouraging results already. And her pattern has been to have good results to new anti-epileptics early-on, and then eventually her brain finds a way to seize around them. So because I believe in the power of prayer, I am asking for yours now. Please pray that this drug, Banzel, is just what we need to finally rid our amazing little girl of the seizures which have stolen everything from her. She really needs this. Brain surgery is not an option and we have very few drugs left to try.

Thanks for caring for our little girl. And I will update in more detail soon.

Love to everyone,

Liz

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10 thoughts on “Quick Update

  1. So sorry to hear things have not been better. Maddie is always in my prayers and I will especially pray for the drug Banzel to be the answer for her. Love to all, Loretta

  2. There really aren’t enough horrible words in the language to describe the evil pile of ‘s’ that seizures are. They are so wrong on so many levels I can’t even begin, besides…it’s something you already know and I don’t really need to even tell you.

    I hope every day to hear that they’ve stopped. Stay frosty. All of you are in all of our thoughts.

  3. I know how hard it is to try a new med…especially one that you haven’t heard the greatest things about. But, as you know, nothing makes sense in the seizure world. You never really know why something works for one child and not for another. I am just so happy that Banzel seems to be working for Maddie. And I am hoping with all my heart that you find the right combo soon.

  4. Prayers go out to your beautiful family on this drug being the answer to ALL OF OUR PRAYERS! And prayers go out to the Docters who see to her health and wellness, as well as to the Dr’s who research and find new ways to treat the illnesses….Prayers from Quantico area!

  5. Liz,
    I think about you and your beautiful Maddie often. I know I haven’t posted a reply in awhile but please know you are in our prayers and always in our thoughts. We’ll be praying for this new drug and for all of you!! Love, The Schwab Family.

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