A Slow Unraveling, Part 2

This is the last of the updates, this one from October, with a November update tacked on the end. If you’ve read all the portions of her story, some of this information may not be new, but it reveals the order in which we learned what might come next.

October 20, 2014

I’m not sure who hates blood work more, Tarica or her mother. This time, at least, she didn’t scream and fight. She looked at me as the syringe filled red, and her eyes sheened with tears, but she stayed calm. She’s learning to accept the needles that come with the drugs. A number of AEDs (anti-epileptic drugs) require routine blood work to ensure the drugs are not destroying the body while protecting the brain.

Her Carbatrol levels were low, so we increased it, with three seizure-free days following. By this time, I no longer had much hope in it lasting, so the return of the seizures on the fourth day did not devastate me.

Over this time, Tarica began having two distinct types of seizures. One of them was close to the original kind: Her arms extend stiffly, sometimes flexed, sometimes not; her head tips forward and to the side; her breathing deepens and quickens; her eyes glaze over and blink spasmodically. The other kind of seizure scares us: It has all the characteristics of the first kind, but it’s longer and her whole body spasms and she loses her balance and crashes to the floor. Or down the steps, as she did once. If only she had enough warning or presence of mind to protect herself from injury.

At a doctor appointment on October 13, I discussed options with Dr. Thakkar. Tarica has officially failed two medications—meaning, two medications have failed to suppress the seizures. Once an epileptic has failed two medications, she has a less than 5% chance of gaining seizure control with drugs. Because of these low odds, doctors recommend seeing if control can be gained through other means. These options include the ketogenic diet, VNS implantation, and brain surgery.

However, Dr. Thakkar wasn’t quite ready to cry uncle. She had one more drug she wanted to try, a “big gun,” she called it. “If Depakote doesn’t stop the seizures, then it’s not likely any other drug will either,” she said. “Let’s try it, and in the meantime, I recommend you meet with Dr. Gedela. He works with patients like Tarica, and he’ll tell you what he thinks you should do next.”

Apparently, she wasn’t putting much faith in Depakote, no matter how big the gun, if she wanted us to explore our next step.

Our next step. I wonder where it will take us. For several reasons, Tarica will not likely be put on the Ketogenic diet. This leaves VNS implantation and brain surgery. At this point, brain surgery is our best option, although Tarica will need numerous tests to determine if she qualifies for surgery.

In the days leading up to the start of Depakote, Tarica had three to seven seizures during the day. When we added Depakote to her regimen, we saw little change in seizure frequency. Perhaps it will take a while for the drug to build up in her system. Or perhaps it won’t work at all.

We found one blessing in this drug switcheroo. With the change from Tegretol to Carbatrol back in August, she became someone nearly like our Tari again, the Tarica-not-on-drugs we miss so badly. She pays a price for this: The Carbatrol gives her daily bellyaches, sometimes lasting most of the day.

As of today, October 20, Tarica is on three drugs and has at least three seizures a day. I am working at weaning her off Keppra; we have little evidence it’s been effective. Once she is off Keppra, some of the remaining behavior problems and mood changes—known side effects of Keppra—may disappear. Sometime this week, Dr. Gedela’s office is supposed to set up an appointment for us to meet with him.

This morning while getting ready for school, Jenica said to me, “Sometimes my friends scare me when they breathe heavy. I think they’re having epilepsy.”

I laughed, even though it wasn’t funny. “I know exactly what you mean,” I said. “When I see a child put his head to one side in an odd way, I think he’s having a seizure, too.”

Linford said the other day, “I can’t figure out why I’m always tired. Maybe it’s because of the ongoing stress of Tarica’s condition.”

When one member suffers, the others suffer, too. This is what it means to be family.

* * *

Read When God Answers Prayer, Sometimes It Hurts for an account of our visit with Dr. Gedela.

* * *

And a final update for today, December 1:

Tarica is weaned off the Keppra. She is still on Carbatrol and has had the Depakote increased, but she still has seizures nearly every day, numbering from one to six. This does not include her nighttime seizures, but since she sleeps through most of them, we are rarely up to count them.

Although it doesn’t seem like much improvement, she is doing better. She has an occasional and random seizure-free day, but unfortunately, we don’t know until bedtime that it’s a day worth celebrating.

Nearly all her seizures now are like the one she had when we were with Dr. Gedela. If she is standing, she falls over, and her whole body convulses.

Children’s Hospital has not yet opened their 2015 calendar for scheduling, but once they do, we will have a date for Tarica’s hospital stay. This will be the ten-day stay with all the tests that will determine if she qualifies for brain surgery. Or not.

I have no idea how to pray, so I have come to this: Lord, Thy will be done.

Will you pray this with me?

18 thoughts on “A Slow Unraveling, Part 2

  1. Hi Stephanie, i’ve been following for a bit and emailed my sister in law, Loisann (weaver) Witmer to see if she knows you because you just looked so familiar. She told me you taught school together and she was in your bridal party. I’m sure i’ve seen you, hence the familiar look. 🙂

    I’m so sorry for what you’re walking through and yet at the same time, i know God is bigger than it all. I don’t doubt that God is going to use your testimony of faith, through all the doubts and fears and questions. I admire your honesty and am blessed by it. Keep sharing Jesus in all the raw parts and He will shine brighter and brighter.

    Love, Darla

  2. With tears in my eyes; I am committed to praying for you and your dear family! May God’s will be done and may your testimony of your faith in Father God be a beautiful encouragement to all that you meet along the way that need to feel the Love of Jesus!

  3. Stephanie and family, I will pray for this hard situation in your life too. May God’s will be done. And may you daily feel His grace, blessing with wisdom and strength for each step of the way.

  4. I have been praying and will continue to do so. God knows the way, stay close to Him and He will see each and every one of you down this path. Yes, His will be done, because it really is the only way.

  5. We don’t know your family, Stephanie, but we are family through Jesus. I have told my 5 year old daughter about Tarica and her seizures. She prays faithfully for her, almost every night. Our hearts go out to you, and we are praying. May you find His grace carrying you through all of this!

    • Thank you for your prayers, Cheryl, and especially for the prayers of your daughter. It means a lot to Tarica to know that other children are praying for her.

  6. Hi Stephanie,

    Can’t imagine the pain of this new challenge on top of everything else you’ve gone through! I couldn’t believe my eyes when I started reading your blog!

    I will definitely be praying for you and your family!

    & BTW…I’m 21 weeks pregnant and everything seems to be ok!

    • Congratulations, Ruth! I am so, so happy for you. It’s been a long road for you. I will pray for you and your little one. Please let me know how it goes.

  7. Amazingly I had all ready been praying that, Stephanie. I can’t question the Lord because I know His ways are better than anything I can ever even imagine in my wildest thoughts. I also know that we humans can only see the mire when we are in it but Our God sees the whole journey and as we read in Romans 8:28 All things work together for good. Through the tears, I too shall just hold on to His Promises and Trust in Him. Continue to hold on to Him, my sister, He will bring you through this.

    Hopefully this will bring a little smile for you: you not only have us all praying for you, but we are crying for you too!

    Much Love,
    <

  8. Pingback: A Slow Unraveling, Part 1 | Stephanie J. Leinbach

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