Jade’s turn

1 Mar

Since Jade started having seizures at the end of May, I searched for (and found) blogs of families who also have children with epilepsy.  A number of them have seen improvements in the children’s seizures, either through finding the right medication or through the ketogenic diet.  I love reading about the kids who get better —  their stories of hope are so inspiring and heart-warming.  But I have to admit that I’ve felt envious, too.  No child deserves to suffer from seizures but reading these stories of recovery would make my heart cry, “When is it Jade’s turn to get better?”

Now, to be fair, Jade is much better than she was in September and October.  If we’d counted every twitch of her body as a separate seizure, as some do, she was easily having hundreds of seizures a day.  She was doped up on drugs, zombified, drooling.  One family described it as “looking at a blank child”, like the child isn’t  even there — that’s what Jade was like.

From the day Jade started the ketogenic diet, she started doing better.  We’ve had ups and downs with her seizure count and energy, but overall we knew the diet was making a difference, that is was working its magic for her.

These past few days, I’ve been on the brink of tears so many times.  And although once I really did burst into tears after fighting with Jade to finish her lunch (she’s discovered the trick of not swallowing — grumble) most of the time, the tears haven’t been from anger or frustration, but tears of relief and gratitude.

We started Jade on her new diet plan (same calories, but more of them from fat) on the night of the 20th.  It’s been barely a week and a half and we’ve seen dramatic improvements.  The last four days we have watched Jade bloom so much, it’s absolutely breathtaking.  She’s been pretending to read to herself, using new words and new word combinations all on her own, playing with other kids, and practically overflowing with energy.  She sang the first two lines of Twinkle, Twinkle Little Star the other day while we were going downtown, and I had to remind myself that letting the tears come out would not be conducive to driving.

And the seizures are way down!  Mornings have long been the worst time of day for seizures.  We try to whisk her out of bed and cram breakfast down her throat as quickly as possible because after fasting for about thirteen hours her body needs fat for energy ASAP.  Yesterday she had one very light body jerk and a bunch of twitches during breakfast, but she had absolutely none the rest of the day.  And today she had none during breakfast.  I’m keeping my fingers crossed that today might be the first seizure-free day for Jade since September.

It looks like it’s finally Jade’s turn to get better.

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19 Responses to “Jade’s turn”

  1. Jenny March 1, 2009 at 4:23 pm #

    Congratulations!
    We’ve seen improvement in seizures but no seizure free days yet. We’ve had no cluster days and that feels like a miracle compared to the past!
    It would make waking up in the morning so much nicer for all if we weren’t just watching her waiting for “them” to start. And after such a great day don’t you hate to see sleep come! OHH if it could just go on and on and on!

  2. Kara March 1, 2009 at 5:36 pm #

    How exciting!!!

  3. Shannon Mac March 1, 2009 at 6:20 pm #

    i too am in tears from reading your posting. i’m so happy for you that things are getting better and better. and as always, i’m so proud of you for doing this difficult diet for jade. i can’t imagine how challenging it must be, not to mention the extra work. you are my hero fawn; you are truly remarkable and i’m certain that’s why i love you so much! i too am keeping my fingers crossed for you all! :)

  4. Marianne March 1, 2009 at 7:00 pm #

    I am so excited and pleased for you. How thrilling for you to see such progress!

  5. Tammy March 1, 2009 at 7:12 pm #

    Yay for Jade! Here’s hoping that this spring is her time to bloom.

  6. Murray March 1, 2009 at 8:01 pm #

    That is incredibly good news, Fawn!

  7. Captain Momma March 1, 2009 at 11:06 pm #

    Praise God!!!!! Fawn that’s fantastic! It brings tears to my eyes! What a blessing. Who could have know that the slight change in fat content could do so much? Amen.

    Blessings for a wonderful week :)

    Kelli

  8. Fawn March 1, 2009 at 11:35 pm #

    Thanks, everyone. It’s now 11:34 p.m. and I’m heading off to bed. Jade made it all the way to bedtime (and hasn’t woken up) SEIZURE-FREE!!!

  9. Jamie March 2, 2009 at 5:22 am #

    I’m so happy for you! I hope it keeps up!

  10. Christina March 2, 2009 at 6:58 am #

    Wonderful news! So, so happy for you!

  11. Janet March 2, 2009 at 7:24 am #

    I’d say a celebration is in order!

  12. Tine March 2, 2009 at 7:40 am #

    I’m SO glad to hear that, Fawn :) – hope it keeps up !!

    Lots of love from Germany !!

    ♥ ♥ ♥

  13. Sarah March 2, 2009 at 10:44 am #

    Yay! Wonderful news! Let’s hope it keeps up… and even if it takes a little longer to stay completely seizure-free, you still had a wonderful day. All the best to Jade – and her family!

  14. Uncle Al March 2, 2009 at 1:45 pm #

    Now that’s what I call good news!

    Give her a hug from Diana, Dili and me.

    Love,
    A

  15. Opa March 2, 2009 at 2:16 pm #

    And another GIGANTIC long distance hug

  16. courtney March 2, 2009 at 4:16 pm #

    This post brought tears to my eyes! You are an inspirational Mom, I only hope when I am blessed with children, I can be as strong as you!

  17. Marian March 2, 2009 at 6:23 pm #

    Wonderful, glorious news. More hugs…to all of you!
    Lots of love.
    Marian/Mom/Gran

  18. Barbara March 2, 2009 at 7:18 pm #

    WOOHOO!

  19. Andrea March 4, 2009 at 10:22 am #

    What a relief.

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