Exciting News for Us: Epilepsy Update

 

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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!

Caleb, back when he was 4, which was when he was having seizures regularly. We are so excited to put to see him doing well.

Caleb, back when he was 4, which was when he was having seizures regularly. It is such a blessing to see him doing better.

 

 

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.

photo from https://www.headway.org.uk/executive-dysfunction-after-brain-injury.aspx Caleb’s abnormal activity is between the parietal and temporal lobes, the area associated with reading.

“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.

 

 

 

 

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!

 

 

 

 

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