EEG Results: I finally have answers to my questions about Caleb’s epilepsy.

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I held my breath (okay not really, but it felt like it) as I asked the question, “So did it show any seizures???”

{An EEG is a test designed to measure brain waves. Caleb wore electrodes all over his head for 24 hours to get a better idea of what is going on in his brain. Caleb has a history of seizures.}

She (the neurologist) said, “It was an abnormal EEG. Are his seizures on his right side, because the activity is happening on the left side of his brain, which controls the right side of the body.”

Sigh. Suspicions confirmed. Drat. Keppra treatment lives on.

I’ve never noticed if seizures were happening more on one side than the other. We had this EEG because he continues to jerk around in his sleep, and we weren’t sure if what we’re seeing is seizure-related or not.

She started to explain it, but the she said it would be easier to explain if she could show it to us, so she took us back to the testing room and pulled up several different photos of brain waves. She pointed to each place where the left, posterior portion of his brain is having spikes.

Dr. La Garda also asked if Caleb is still seizure free, so I was confused.

“We saw him jerking during this EEG, so were those seizures?” I asked her.

“No. Those weren’t seizures, just abnormal activity,” she answered.

“Are they related to seizures? How many people have this? Would this happen in a normal brain?” I asked. I can’t believe I was actually able to think of the right questions to ask. It seems like doctors never explain enough, and yet, I never seem to think of the right questions.

She said that about 6% of the population would show this sort of activity. She said she almost called it a normal EEG result, “but then he did this,” and she showed me another page and pointed to more spikes. She explained it, but I didn’t understand or memorize it well enough to regurgitate that information.

She also said that some jerking in your sleep is perfectly normal. That’s good to know!

http://www.biomedresearches.com/root/pages/researches/epilepsy/eeg.html

I asked her about the portion of his brain where this is happening. She said it’s the visual area. On the map above, she showed me that his activity was between T3 and P3. She asked if Caleb is doing okay in school.

“Yes, except he has had a struggle with reading, from the very beginning.”
“Oh, yes,” the doc said, “That comes from this area. Dyslexia is also associated with this area not functioning properly. It looks like the brain could be healing here. The brain heals in sleep. Perhaps he is getting better. He has been seizure free for two years. I think he has a 50-70% chance of growing out of it. We’ll need to re-test and re-visit all of this when he hits puberty.”

“Oh. Puberty. What happens then?”

“Well, the seizures will either disappear altogether, there will be no change, or it will get worse.”

Great. Basically, no one knows.

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Caleb enjoyed kayaking with Alan today. He looked forward to that all week. They saw a jellyfish and lots of seals and sea otters.

She filled out his sports physical, and we left. She said he’s fine for soccer, basketball, and baseball. She said he can even ride rides at amusement parks. (I asked because I’ve always wondered. Caleb loves the rides.) She said no to scuba diving (pressure) and fighting sports like wrestling and boxing. He doesn’t need to deal with head injuries.

He will continue to have follow-ups every 6 months, and his Keppra dose will stay the same.

I’m thankful there were no full-on seizures, and I’m thankful we don’t have to increase the Keppra. I don’t like that he has to continue to take a brain medication, but it is what it is.

Now I’m just hoping to read more on the visual portion of the brain, and I’m going to focus on patience with Caleb when doing reading and writing activities. The difference between he and Joshua is a massive gulf, but when it comes to math, Caleb is soaring high. This explains a lot.

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Caleb, Xavier, and Joshua, all reading together

Caleb is just a smidgen behind in reading. He seems to be gradually catching up. He passed his reading exams this year, so on paper it looks like he’s fine, but if you listen to him read, you see that he reads slowly and monotone. If he’s reading to someone who makes him nervous, it gets much worse. If Caleb reads to you, please be very quiet and patient. Pleasing others is important to him. He thrives under encouragement.

I also hope to pray more for Caleb.

I talk about prayer, and I pray off and on all day long, but there are so many things that I just plum FORGET to pray about. Because Caleb always seems fine, and we haven’t seen a seizure in two years, I forget to pray about it very often. This is why it’s important to keep a prayer list out and updated. It’s so rewarding, too, as you see those prayers get answered.

Thanks for taking the time to read and learn about Caleb and his epilepsy. For more of Caleb’s story, you can read my past articles on epilepsy here: Caleb and Epilepsy, Keppra Caleb and Epilepsy, Changing My Expectations.

12 comments

  • I have involuntary movements (jerks) with a normal MRI and EEG. Mine, unlike Caleb happen when I am awake and are absent when I sleep. I was diagnosed at age 4 with myoclonus dystonia. No explanation why I have the disorder and why I started showing symptoms randomly at age 4. I tried over 30 medications and nothing worked, expect alcohol. Two beers later and I can be still 🙂 However, one can not medicate on alcohol. I can sympathize with the frustration neurological disorders bring. I pray Caleb will remain seizure free, a little jerking at night is nothing big 🙂 I would pray so much when I was little my jerking would go away, now I embrace my uniqueness, and thank God I only have myoclonus and nothing major. However, I continue each day to pray hard neither one of my boys ever show symptoms of myoclonus or any neurological disorder. Thanks for sharing Caleb’s story!

    • That is SO interesting! Caleb is fortunate that his only happen in his sleep. I think it’s much easier that way. I like what you said about accepting your uniqueness. That is such and admirable attitude to have.

  • Good luck, and I’m praying the seizures disappear soon.

  • Oh man.. I didn’t even realize you were dealing with anything like that!!! I will keep ya’ll in my prayers.. but it looks like you’re doing all the right things! – http://www.domesticgeekgirl.com

    • Thank you so much. It’s going well. 2 years seizure free is something to celebrate, now that we know that recent activity wasn’t actually seizures. I so appreciate prayers and encouragement. Thank you!

  • It’s always so frustrating with how much and how little they know. About anything. 50-70% seem like high odds he’ll outgrow it. I’m hoping for that for you all!
    He seems like a smart and wonderful kid. And yay to amusement park rides.

  • I’m glad you’re getting the answers you need about Caleb and praying that the seizures disappear by puberty!

  • McMom

    Fascinating. I have tons more questions now. But I will refrain. I guess the more you know, the more you realize you don’t know, ya know? Kayaking trip with Daddy – fun stuff! Also, nice shot of Caleb’s new grill!

    • I am terrible at dreaming up questions. It’s funny. When I talk to my mom or your mom about any subject that’s going on in my life, they always think of 20 more questions than I do. I would have made a terrible news reporter. Feel free to ask any questions that you have. We’ll do our best, even if it’ something we’ve never actually thought of.

I love comments! Otherwise, it's really just me talkin' to myself...

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