Defining Epilepsy Terms and Our Situation

It is my goal to share our adventures with epilepsy by telling it as a story.

I believe in the power of story to change lives and touch hearts. Story is more compelling than bare facts. However, story limits me at times. I can tell you only what actually happened; I cannot invent stuff in order to make a point. Also, a good story will rarely stop halfway through and give a lecture on various facts to educate readers or to remind them of what happened a few weeks ago.

I dislike stories in which the characters talk to each other in order to talk to the reader—you know, when they say things that they both already know and wouldn’t say to each other in real life. If people did this in real life, one of them would say, “Duh. I was there. You don’t have to tell me all about it.”

The writer is doing this to tell or remind the reader of past events. It’s an easy trap for a writer to fall into.

In a book, a reader’s questions are more easily answered. If you can’t remember what exactly happened at the beginning, you can flip back and reread it. Here, on this site, it’s a little harder. And some of you have not been here since the beginning.

For these reasons, I’m going to give you some answers to the questions I’ve been receiving, online and off. Here are the facts. Not much story today.

What is a seizure?

The simple answer: haywire electricity in the brain. The complex answer? Uh…I’m sticking with the simple answer.

Everyone has electrical activity in his brain. A seizure is when those electrical signals go crazy.

If someone has a seizure, does that mean it is epilepsy?

Not necessarily. Fever, illness, or head trauma could provoke a seizure. Epilepsy is not diagnosed until someone has had two or more unprovoked seizures.

What kind of seizures does Tarica have?

A quick rundown on seizures: There are two main types of seizures, generalized and partial.

Generalized seizures mean both sides of the brain are involved from the start of the seizure.

Partial seizures begin in a specific area of the brain and remain there.

Complex partial seizure bridge the gap between the two types. They begin in a specific area and spread to involve more of the brain, sometimes becoming secondarily generalized.

The doctors believe Tarica has intractable complex partial seizures. The upcoming tests will reveal additional information.

I can’t define seizures more than this without getting confusing and wordy. Because each brain is unique, it is difficult to group seizures neatly into categories. There is overlap between the types.

What are intractable seizures?

Seizures which cannot be controlled by medication are known as intractable. They are also called “refractory” or “drug resistant.”

What do her seizures look like?

With no warning, she falls over backward. Her muscles are drawn tight, and her face is contorted. For the first part of the seizure, her arms and head twitch convulsively. Then her back arches and the convulsions spread to involve her whole body. Her head will tilt back until it seems it might break off her neck. Her eyes are wide and staring. While she does not wholly lose consciousness, she is not able to communicate or respond during a seizure.

The seizure lasts somewhere between 30-60 seconds. She is exhausted after it is over.

Why did her seizures change?

Back in March of last year, Tarica’s seizures lasted 10 seconds, maybe 20, at the most. Only her left arm and head seemed involved in the seizure. She did not lose her balance, and she did not convulse.

The tail-end of a seizure March 9, 2014

The tail-end of a seizure – March 9, 2014

 

By the end of the year, her seizures had escalated to what we are seeing now. Why? I have no idea. In my research, I’ve stumbled across repeated assertions that seizures do not usually grow worse over time. Why have hers? This is a question I want to ask the epileptologist.

What is an epileptologist?

It is a neurologist who specializes in the treatment of epilepsy, especially involving methods other than medication, such as diet and surgery.

How is Tarica doing now?

She is doing very well. In the two weeks since her big seizure, all of her seizure activity has been confined to nighttime. We are praising the Lord for this break.

The doctors will likely lower her medication dosage to induce more seizures while she is hospitalized.

Didn’t the doctors already find her seizure focus?

First, a definition: A seizure focus is the place in the brain where a seizure begins.

Do you remember the doctor told us back in March that there is a tiny speck of abnormality in her brain which they considered to be the seizure focus? At our appointment in November, the epileptologist told us that he cannot be confident this is the actual origin. They consider her seizure focus to be unknown at this time.

Is she going for brain surgery?

No. She is going for testing to see if she qualifies for brain surgery. She will qualify if the seizure focus can be found, and if that focus is in an operable area. For example, if her seizures originate in an area of her brain essential to her memory, the doctors would not be willing to risk surgery, lest she be altered tragically and irrevocably.

Do you want her to have brain surgery?

Yes. No. Yes. I don’t know. She may qualify, she may not, but either result will be difficult to accept and to process.

More than anything else, I want her to not have seizures. If it takes brain surgery to accomplish that, then so be it. Of course, I’ll take a miracle cure, too. (God, are You listening?)

If she qualifies for brain surgery, we still have to choose to go ahead with it. I don’t look forward to making that choice. If something goes wrong, we could regret it all our lives.

Other than seizures, is Tarica “normal”?

Let me tell you one story.

While traveling on a December night, Tarica said, “Dad, guess how many Christmas lights I counted? It’s in the thirties.”

Linford said, “Thirty-three?”

“No,” she said, “it’s four more than that.”

“Thirty-seven?”

“Yup.”

Is she normal? I’ll let you be the judge.

* * *

Do you have any questions? What have you been wondering? Your questions will help me tell this story more clearly.

It’s snowing like crazy, and I’m going nowhere today. Go ahead and ask away.

11 thoughts on “Defining Epilepsy Terms and Our Situation

  1. Know that you & yours are in my prayers. I cannot imagine the magnitude of what your family is going through. We know our God is Almighty!
    We have this little package we got together, only to discover that I have no idea what your address is, so we can send it! Thank-You!

  2. Her seizures are not hurting her brain! That is an amazing conversation for a five-year-old. I know my five-year-old could never hold those numbers straight in her head!

    Thanks for all the clarifying information.
    Gina

  3. Thanks for the update and info! Our prayers will continue to be with you! God has blessed you with a bright, sweet, little girl!
    We have a six year old daughter who has taken a big interest in following Tarica’s story. She likes to mention her name for prayer in family devotions. She’s wondering if we can send her mail at home or while she’s in the hospital? If you have an address you don’t mind sharing, she’d be delighted to send a card, but if you’d rather not share your address, I understand, and that’s perfectly ok.

    • Your daughter is pretty sweet herself. 🙂 I don’t yet have the information for a hospital address. I will contact you via email with a home address. Here is not the place to do it. Not that I’m paranoid or anything. 🙂

      Thanks for your continued prayers.

    • I understand more about epilepsy than I wish I did, but I’m glad it made sense. I keep thinking of all the details I left out, but if I had included them, it might not have been as understandable. The doctors themselves admit there is much they do not know or understand about epilepsy.

  4. Hi Stephanie,
    Thank you for sharing today. I feel it has opened my eyes to more specific prayers for Tarica and your family. I too would like to send her a small package for her hospital stay. Please contact me through email as well with an address. No wacky crazy stuff, I promise!

    • Would it be helpful for me to post specific concerns and needs Tarica will face while in the hospital? Not that I’m begging for prayer–wait. Yes, I am. And why not? She is in dire need of it. (We all are, actually, every one of us.) For my own prayers, I like when I know enough about a situation to pray intentionally and specifically. Perhaps I shall be brave enough to ask for specific prayers.

  5. I am following your page. My heart goes out to you. We have a story of seizures with our daughter. Our son outgrew them PTL Our daughter is 21. She started seizures around age 15. She has complex-partial seizures. She has always stayed concious. We have had a journey of finding a medication that makes her seizure free, we praise God, that He has answered our prayer, after working with meds for 3years she has been seizure free since Nov ’14. It is such a blessing. Our daughter feels better than she has in a long time. She has been able to be normal. She has gone to Bible School, and is a nanny for twins. We know we are never alone, for God is with us. We pray you sense God near and may He give you wisdom through each appointment, test, etc

    • Glad to have you here, Diane, and thanks for sharing a bit of your story. I am curious what medication your daughter is on, if you don’t mind saying. Tarica is on Carbamazepine (generic for Carbatrol) and Divalproex Sodium (generic for Depakote). Not that I expect a medication which works for one person will work exactly the same for another, since every brain and every body is unique and responds differently.

      I rejoice with you over your daughter. Such a blessing to be seizure free.

      • currently she is on, Zonisamide, generic for zonegran ( we will probably be weaning her off of this med as we don’t think it is the one doing the work) She was put on Lamotringine generic for Lamictal. It was when she was put on this med that we saw a change. It has been quite a journey through meds. Sometimes being on 3 at once. There are a host of meds. Surgery was mentioned, but merely in passing conversation. Our daughter is not in favor in any way. Diane

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