Caleb’s Epilepsy Battle

Caleb, doing what he does best, being a WONDERFUL brother.

I had rather hoped it would be a very long time before I had to write any more posts about seizures, epilepsy, and our darling Caleb.

First, I want to reiterate that epilepsy is simply that, it does not make a person any less intelligent than any other person. It simply means that a person has had two or more seizures of unknown cause. I feel the need to make that very clear, since so many people have had no experience with epilepsy. I didn’t know anything about it either until the summer of 2011.

For a little background information, you can read this post: Keppra Caleb.

We think that Caleb has been seizure free from April 2013 until the present. Once he makes it to the two-year mark, he could have the “epilepsy” label removed, and we could begin to wean him off of Keppra (his seizure medication).

I so badly want that to happen!

Unfortunately, we have recently seen an uptick in odd activity. We aren’t 100% sure that any of it was actually seizures, but hopefully we will get some answers soon.

1. Caleb has had terrible sinus troubles since October. If Caleb get a cold, that’s it. It’s with him for months, and it usually comes early on in the winter and stays until May or so. Poor, poor Caleb.

Caleb, 18 months, 3 years before the seizures began

Some years antibiotics cleared him up in a snap. Other years, nothing worked. I had him allergy tested, and the only thing he tested positive for was dust mites. Is there anyone who is not allergic to dust mites?

2. Caleb has fallen out of bed in the middle of the night at least twice in the past couple of weeks. Why? We are not sure. He could have just rolled out, or this could have been more seizures. See, Caleb’s seizures happen in his sleep, so it’s really hard to track them.

3. On the flight home, Caleb slept in his seat next to Alan. Caleb kept jerking in his sleep. They were all quick, muscle spasms, in all different limbs, as in one arm would twitch for a few seconds. Then a few seconds later, his other arm would. We’ve seen a LOT of this from Caleb since 2011. We don’t know if they are partial seizures or just muscle spasms. His neurologist says that the only way to know is to have him actually do what he does during an EEG. (EEGs measure brain activity. Caleb had one in 2012, but it was only a 20-30 minute one, and it was all normal activity.)

Caleb and Dan were alll about Battleship right before Christmas.

4. He had two nose bleeds yesterday.

5. I firmly believe that Caleb has more seizures when he is having sinus problems.

6. We have made Caleb stop sleeping in those fleece footies he loves so much. The boy gets too hot in his sleep, and fevers are such an obvious trigger. He now sleeps in much cooler clothing.


So what to do……Obviously, something should be done.

1. We called Caleb’s neurologist. She wants him to do a 24 hour EEG. That would show us how many seizures he has in a day. They wanted to do this on Monday, but our insurance has issues, so they have to work that out first.

2. We have put him back on daily Allegra.

3. I am also going to put him back on Flonase. These are both things he has taken in the past, so we still have them. We had just stopped using them when Caleb was doing so much better. I feel so bad for the amount of medicine this poor boy has to take all the time. However, when it works, medicine is better than being miserable.

Caleb keeps us laughing. This boy lives to have fun.



Caleb is just as hilarious as ever. You’d never know he has these problems, except for the constant sound of snot slurping.  We got to go hiking at Pinnacles National Park today, all six of us. We all had a great time. Once we’d hiked probably 2 miles UP, Caleb kissed me on the arm and said, “This is the greatest field trip I’ve ever had!!!” Nothing makes Joshua and Caleb happier than hiking and rock climbing…not simulated rock climbing, but real, dangerous, scaling mountains kind of climbing.

It has been such a pleasure to teach Caleb this year. The improvements in every single subject are amazing, and I’ve actually gotten to watch it happen. Caleb has this eager joy for life that makes him a blast to be around.  When we were preparing for our Christmas trip, I went around the house and asked each individual child, in secret, “Who would you like to sit by on the plane?” Everyone replied, “Caleb.”

By the way, they are all liking school much better now that we’ve moved school from the school room to the dining room table. I’m in the process of rearranging all my bookshelves this week.  More on that in my next post!






  • Donna Stephens

    You know, if your luggage had not been lost you would not have bought that second monitor. Seems things happen for a reason… Hopefully insurance will step up and you can get some answers. We will be praying extra hard for Caleb.

    • We already had two monitors. We aren’t keeping the new ones. We are just switchng from Dan cam to canteen cam. I think we will give you the new color one. It will come in handy on trips for years and years of grandkids .

  • I love how you remember that Celeb is HIMSELF first and has this problem which does not define him. On the other hand, as a mom, I can only imagine how your heart aches for him to outgrow or leave epilepsy behind. He’s blessed to have you as his mom! Looking forward to seeing how your school “move” works out.

  • I hope you have some answers soon and he starts to feel better 🙂

  • There are SO many stigma’s out there April. It was important that you reiterated that a person with epilepsy “does not make that person less intelligent than any other person”.

    There are many kinds of epilepsy. My youngest (16 years old) has what is known as ‘Petit Mal” epilepsy. Her seizures are sometimes known as “absence seizures,” because she will blank out for sometimes 10, maybe 15 seconds.

    She takes it all as part of who she is, (harder on mom and dad), when we hear stories of her made fun of and ridiculed, and teachers who think she is not paying attention, doesn’t focus or is lazy.

    The hard part for Fiona right now is wants to drive SO badly, but is not able to because of her condition.

    I sincerely hope people will treat Caleb just the same as any other person. He is a precious boy.

    April, thank you for sharing this from your heart.


    • Carl, I had no idea that one of your children has epilepsy too! Caleb has had one (his very first seizure) absence seizure, but then the rest were sleep. Bless Fiona’s heart on the driving piece! That is one thing I have definitely worried over when it comes to Caleb. That’s a life altering thing, to not be able to drive. And yes, these things are hard on Mom and Dad for sure. I love that you say she has taken it all as a part of who she is. I hope Caleb can handle it that well as he gets older and grows to understand it more, too.
      Thank you!

      • Thanks April, apparently some cases the child will outgrow it when they reach puberty, but in Fiona’s situation, everything stayed the same.
        Always lessons to be learned in God’s tapestry of life. We won’t see the whole picture when we get to heaven. Then everything will make perfect sense. 🙂

  • McMom

    We are praying for Caleb! I love that everyone wanted to sit by him on the plane – too funny. He’s a fun guy!

  • Finally figured out how to comment. Praying you find some answers soon! Also, one of my high school friend’s sister is now a professional athlete and also has epilepsy. I thought I’d pass this short clip along–maybe it will inspire him or you?:

  • Boys and rocks. We’re going to have to meet up at Pinnacles some time. My Dad was the Chief Park Ranger there for about 10 years so I have oodles of memories I’d love to revisit with my own boys. The only thing more fun than a boys and rocks is a bunch MORE boys and rocks!

    • Oh my goodness! That is so neat! My kids saw a park ranger there that day, and they all thought that would be an extremely cool job to have. Yes! We could totally go climb some rocks together!

  • Pingback: EEG Results: I finally have answers to my questions about Caleb’s epilepsy. | Stories of Our Boys

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