Caleb, with his dad and DaddyO. Caleb’s new neurologist actually looks so much like DaddyO, Caleb and I laughed that they are probably related.

I only have 10 minutes to type out this update, so I’ll cut straight to the chase.

WE ARE SO EXCITED!!!

After years of having to give Caleb seizure medication, he many finally get to come off of it. Caleb is so excited that he is actually willing to endure another EEG. He is no fan of EEGs. Let me tell you. He is permanently weary of all things doctor related due to all of the medical tests he’s had to do for the seizures. ugh!

But next Saturday Caleb will have this EEG, and so long as it comes back normal, Caleb will be declared well!!!!! He will no longer be on Keppra.

He still has a 30% chance of having another seizure, which is far higher than the average Joe, so we still have to keep an eye out, but since he’s been three years without having one, the benefits no longer out-weigh the side effects.

It’s an exciting time for us and especially for Caleb. He hates taking Keppra. I’ll keep you updated. October 15th is the big day!

The post Exciting News for Us: Epilepsy Update appeared first on Stories of Our Boys.

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.

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.

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.

The post EEG Results: I finally have answers to my questions about Caleb’s epilepsy. appeared first on Stories of Our Boys.

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.)

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!

The post Caleb’s Epilepsy Battle appeared first on Stories of Our Boys.

 I firmly believe that God often prepares us for future events.  Ever since college, I have witnessed lots of different kinds of seizures in many different people.  There are so many different kinds of seizures that a person can have!! The full-body convulsions that most of us think of are just one of the many ways that people can experience seizures.    I have seen those, but I’ve also known a couple of people that just passed out. I’ve even had a friend that had such short seizures, you barely even noticed that it had happened. Then there are absence seizures, where a person just stares off into space. There are partial seizures, where only part of the body convulses. The list goes on and on.

 That day, in the pool, Caleb was standing next to me, and I suddenly noticed that his eyes were crossed, as he stared off into space.  “Caleb,” I said, “Caleb, Caleb!” and I snapped my fingers in front of his face.

No response.

I was very puzzled, when suddenly, he came to, and his eyes uncrossed.  For the next 10 or so minutes, he was an extraordinarily hyper version of himself, acting super, super silly.  Of course, he was 4 years old, so you expect a little silly, but the thing is Caleb has always, even before medication, had a somewhat nonchalant personality.  That day he was climbing the walls and dancing all over the place.

Relieved that he had snapped out of it, I moved on, but it took me a while to admit to myself that Caleb had had a seizure.

Later, after I’d gotten the three boys dried off and squared away, Caleb settled down into a recliner for a nap, in the living room.  Caleb was always an excellent napper.  He has always, even before medication, required more sleep than Joshua did.  Caleb is a huge kid, in the 95th percentile for height, and about that for weight.

 While Caleb was napping on the recliner, I heard a strange, choking type noise, and I looked over at Caleb.  He was gagging or something.  Then his head started shaking, in a rhythmic pattern.  Then his entire body started shaking. I stared at him in horror and fear for a few minutes, but I knew there was really nothing I could do.

Alan was in the basement with Joshua, and I kept calling him, but by the time he came upstairs, I was holding Caleb in my arms, but the seizure was over.

We were both sort of in a state of disbelief.  In hindsight, I can’t believe I didn’t take him to the ER.  They might could have identified a trigger that was causing two seizures, of two different types, in one day.

And no, Caleb was not sick, nor did he have a fever. Fevers can cause anyone to have a seizure, but that was not the case here.

This all happened on the weekend.  By Monday, I made him an appointment with his regular doctor.  I wasn’t even sure if what Caleb had had was a seizure.  I guess I was just in denial.

You can imagine the sinking feeling I got when Caleb’s first pediatric neurologist explained to me that two or more unexplained seizures is considered epilepsy.

I never knew anything about epilepsy when we started this process.  I feel like it carries a lot of stigmas with it.

Caleb had both an MRI and an EEG, and in the process, I witnessed several more seizures that first year.  All of Caleb’s seizures, except for that first one in the pool, have happened during Caleb’s sleep.

Epilespy simply designates a person that has seizures for an unknown reason. 

If someone says their seizures are ‘non-epileptic’, that simply means that they have found the source or cause of their seizures.

Once we had the diagnosis, I read everything that I could get my hands on about epilepsy and the many different kinds of seizures and seizure medications!

Alan and I pushed back when they wanted to put Caleb on Keppra to prevent more seizures, in the beginning.  What parent wants to have their precious child on brain medication?  Meanwhile, Caleb kept having sleep seizures.

Caleb’s neurologist threw a fit and let us know that if Caleb wasn’t medicated, he could not be our doctor.  Meanwhile, Alan was in Afghanistan, feeling powerless to support Caleb and me during all the testing and such.

Caleb, in his hospital bracelets and hospital gown, and Joshua, supporting his brother by dressing as alike as possible!

 Caleb was such a tough little trooper through all of this.  When they took out his IV, they’d warned me that most four-year-olds would be screaming and crying and unconsolable about it.  Caleb simply sat still, watching the nurse intently, and asking to see and know about every thing that was going on.  I’ve told him he should be a doctor ever since!

  Once Caleb’s neurologist explained to me that without medication, the seizures could cause permanent brain damage from the electrical signals going haywire in his brain, I wholeheartedly agreed to faithfully give Caleb his medication!!!

 This was all during Pre-K 4, and his teacher believed that she had seen him have an absence seizure or two at school as well.  He was having a little trouble focusing at school, probably because of the seizures. We started the medication, Keppra, also called Levetiracetam, in very gradual doses.  Even now, he takes a super low dose for his size.

 In the beginning, we noticed two major side effects: drowsiness and headaches.  The key to curbing the headaches is to make sure Caleb is well fed.  The boy can now eat 2 hamburgers in one sitting!  Wow!  Once we knew to fill up his tummy with good food anytime he asks, the headaches subsided.  Sounds like a no-brainer, right?  We weren’t purposefully starving the kid, I promise!  Apparently, he just needed a little extra.

The drowsiness got better as his body got used to it.

His doctors also keep telling us that lethargy, anger, and being easily irritated are also Keppra side effects.  He does display those traits, though we never know how much of that is from Keppra, and how much of that is just Caleb.

In the moving process, Alan talked to a nurse at our upcoming duty station that is a subject matter expert on Epilepsy and Keppra.  She recommended that we give Caleb Vitamin B6 to help him handle the Keppra better.  We’ve been trying everything to get Caleb to swallow the B6 pill but have had zero success.

Can anyone tell us how to get a kid to swallow pills or an alternative method??  We could use some help here!

They say that Caleb’s low energy level could also be a result of the Keppra.  I hate that, but I figure low energy is better than having seizures.

Once Caleb started Keppra, he went one whole year without any documented seizures. Then he had a “breakthrough seizure” a year ago, that Joshua witnessed.  It was so bad that Caleb actually fell out of his bed in convulsions, in the middle of the night.  He was also sick with a cough and cold at the time, which may have aggravated his condition.

Now he has gone another year with no seizures!  Wahooooo!

If Caleb can make it one more year with no seizures, we can start trying to wean him off of the medication, and if successful, he will no longer be considered epileptic.  Many children grow out of this, and we hope that Caleb will too!  That is our prayer!

For more information on epilepsy:http://www.healthline.com/health/epilepsy/effects-on-body

The post Keppra Caleb: Dealing with Childhood Epilepsy appeared first on Stories of Our Boys.

Most of you already know that Caleb was diagnosed with epilepsy (a person who has had two or more seizures with unknown cause) a year ago.

All but one of his seizures has been full-on convulsions in his sleep.  The one exception was an absence seizure, which he had a year and a half ago, in the swimming pool.

He was standing there, and then his eyes crossed as he stared off into space, and he couldn’t hear or respond to a single thing we were saying.  It was so weird.
Last Friday I was walking the boys home from school when Joshua said something about Caleb shaking so hard in his sleep “last night” that he fell out of his bed.  After much questioning, it sounds like that is exactly what happened, and Joshua has now been reminded of the importance of coming and telling us when he sees anything like this!

By that point, Caleb was already coming down with the cold, so I explained to the neurologist (at Caleb’s appointment yesterday) that I thought it could have been related.  He said that of course it could, and there is no way to know.

He said this starts Caleb over on his two-year count to being epilepsy-free.  Such a shame after not seeing a seizure for a whole year, but this sounds like it was a bad one.
I really feel the need to keep Caleb WELL now.  That boy is going to the doc at the first sign of fever next time, and not an hour will go by without tylenol or advil in his system because fevers are a seizure trigger.  Sleeplessness is also a trigger, and with all the coughing, Caleb wasn’t sleeping as well.
Parenting is a tough job.  I love that little boy so much, and I hate seeing hard things happen to him.
The neurologist said that swim team is still fine for him, as long as we always have someone there watching him, even if it’s just from the side of the pool.  We’re also ever so slightly increasing Caleb’s medicine dosage.
That appointment was yesterday.  I had both Dan and Caleb with me, and with all the waiting and herding little Dan around, I left the hospital newly resolved to have my tubal ligation with this pregnancy!!  It is no fun managing Daniel in waiting rooms when you’re 7 months pregnant and also coming down with a cold!

The post Epilepsy Update appeared first on Stories of Our Boys.