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.

 

 

 

 

I never felt like I had a “special needs” kid, until today.

 

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We look normal, and we are. Did you know that 3 of our 4 kids have some sort of “special need”? Geesh. I wonder how many kids out there don’t.

 

There have been times where I had to mentally decide if my child fit into the ‘special needs’ category. There have been other times when people have said something about one or more of my children having special needs.

I’ve always thought, “Eh, not really.”

Between the four of them we have one diagnosed peanut allergy, one probable peanut allergy, one diagnosed ADD, one possible ADD, and one diagnosed with epilepsy.

But special needs? No way. Those aren’t special needs. Those are merely hurdles, road bumps, qualities, if you will. Don’t call us special. To modify the show tune, “Anything you can do, we can do better. We can do anything better than you. Yes, we can!”

Lol. Kidding. I don’t think we can do it better, but I certainly don’t think a few allergies and seizures should get in the way of any good fun.

Never mind that their ‘special needs’ make up the main reasons, among many, that we are home schooling..

So this was supposed to be the week that Caleb got his teeth fixed from the big scooter accident. We have spent 3 mornings in a row at the dentist office. If all had gone as planned, he could have been 2 teeth down and 1 to go today. Instead, we are a big, fat 0 down, 3 to go. And just writing that brings back that whole sick feeling in my stomach, and that burn in my eyes, that is making this day really hard.

Caleb and his school work.

Caleb, posing with the Christmas Olaf scene that he drew, back when his teeth were still intact.

 

On Monday, we had our consultation with “The Tooth Hero.” This was the dentist that met us two Sunday nights ago, at 7pm, when Caleb knocked his mouth so hard, in a scooter meets sidewalk incident, that he broke three permanent teeth. He’s seven. Why must my children collect permanent teeth so early???

All went super well on Monday, so on Tuesday we headed in for the great rebuilding of tooth #1. Caleb wasn’t worried at all. He trusted his tooth hero completely. He laid down in the dental chair, donned the sunglasses, and the dentist numbed up his mouth. All was well. Unfortunately, some part of this “tasted sour”, and Caleb started to PANIC. They tried to suck his mouth out with that tiny sucker that dentists use, and Caleb wouldn’t let them do it. He was suddenly scared of everything and uncooperative. He just sat there with his numb mouth, shaking his head, and saying, “Aaaaa! No, no!”  He didn’t shout, but you could definitely hear panic in his voice.

Show stopper. The dentist called me in and let me know that he’d have to refer Caleb to a pediatric dentist, who could sedate Caleb, to calm him down so they could work on his mouth.

Okay. I was disappointed, but I understood. I felt fully confident that a pediatric dentist could easily work with him, and we’d be fine.

We made the appointment right away. Today, for the third morning in a row, we headed out, all four boys and me. (On Tuesday, I got smart and hired a babysitter. Phew!)

By the way, I’ve also been running a fever all week. I seem to have an extremely mild chest cold. Don’t worry. Everyone else is fine, but this just adds to my stress level.. As we all know, parents don’t get sick days.

We managed to find the new dentist and were pretty much on time. Caleb, riding in the backseat, asked, “Do you know how to get there, Mom, because I’ve never been to this place?”  Ha! None of my children trust my navigation. Caleb was a big help on Monday, in finding the first dentist office!

So there we were, ready for our pediatric dental appointment. I was very thorough in Caleb’s dental/medical history. This guy can handle it, surely, right?

Eh….

He tried. He had Caleb go to the back, he put ear muffs on Caleb, to keep the noise down, and then he pulled out his tools, to see if he could get Caleb more comfortable with the loud tools.

Caleb didn’t want them anywhere near him. He was uncooperative again. I was crushed. Why was I crushed? Because they had informed me that if the earmuffs didn’t help, this procedure will have to be done in the hospital. That means I have to take Caleb to his PCM, “Primary Care Manager”, and it’s kind of tough to get an appointment. The PCM has to put in a request for the teeth to be fixed in the hospital and deem it “medically necessary”. Then she also has to provide the hospital with a detailed list of Caleb’s medical history. Right. Because after living in 5 different cities in 7 years, and seeing 4 different neurologists, that’s super easy to come by….

I’ve been living in fear of all ‘appointments’ since I started home schooling. We don’t have any grandparents or babysitters. Thankfully, I did find a great babysitter this week. She can even drive!

Why do we have to jump through all of these medical hoops? Because Caleb has epilepsy, and he’s not handling this new experience well. If he could just be a little braver, we’d be fine. If he weren’t an epilepsy patient, they could sedate him in the office. As a seizure patient, they are hesitant to work on him.

Sigh. So today is the very first day that I am seeing Caleb as ‘special needs,’ and I want to cry. Just the idea of all of this paper work and medical offices and appointments, all when I’m supposed to be at home from 9 to 2 everyday, educating 4 children, makes me want to throw up my hands. But I can’t throw up my hands! Poor Caleb has a crooked fang for a front tooth right now.

Back to today’s dental appointment: I was good on the outside. I didn’t put up a fuss or whine or anything. Instead, I took Caleb aside, and told him that if he didn’t cooperate with the doctor and just deal with the loud noises, he was going to find himself in the hospital, making this a lot more hassle. I was just giving it to him straight. I told him that if he could go back in there and get it together, I would buy him a new video game.

Yes, I resorted to *rewards*.  Please, Caleb, oh, pleaseeeeeeeee.

He made an effort. He went back in and got so comfortable with the sucker thing, he stuck the whole instrument in his mouth, but when the doc whipped out the other-whatever-it-is, more panic.

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Caleb was sedated at our old dental office for a couple of fillings last year. If only we were still in Virginia! They were so accommodating!! As if I didn’t have enough reasons to miss Virginia…

We miss you NoVA!!!!

We miss you NoVA!!!!

Why don’t I normally consider any of my children ‘special needs kids’? The thing is that I grew up with a sister who was truly special needs. I know that drill well, and it is HARD. My sister cannot talk, walk, play, or think past the level of John David. She is profoundly retarded. She is a sweet, sweet, loving, smiling soul. She mostly just sits and rocks. I shared a room with her from the time I was born until the day I got married, minus the time I spent in a college dorm room. We love our Amanda. She is truly ‘special needs’. She could never do the things we did. I saw what my parents went through to provide a good life for her. There was no freedom for anyone. Someone always had to be home with Amanda. It was truly difficult to take her places because she yelled out at random, and she had a wheelchair. There was always a shocking number of places with no wheelchair ramps. Also, people stared a lot.  It was a challenge, ya’ll!!

Amanda and me

Amanda and me, ~1986 She’s adorable, isn’t she?

 

And the truth is I’ve lived in fear of it happening to me. I know that I’m not the sweet soul that my mother is. How could anyone ever handle all that she handled? I breathed huge sighs of relief at each prenatal ultrasound, as my babies were pronounced healthy.

My kids are nothing like my beautiful sister, so I just have a hard time with anyone calling them ‘special needs,’ or thinking they can’t fix their teeth because of a well controlled seizure disorder.  I think, “Nah, he’s fine. My kids are fine.”

They ARE fine. I guess it’s time I realize that special needs is not a big, scary word. So what if they have special needs? That is how God made them.

I will just have to broaden my definition of that phrase. I know it scares people. I always roll my eyes and think they are overreacting, but the truth is that very few people have had the experiences that my family has had. I should be more understanding of that.

My biggest concern is that I could jump through all of these (what I consider unnecessary) hoops to have Caleb’s teeth fixed at this hospital, and once it’s done, the cap could fall off in two months, and we’ll be right back where we started from.

It’s just one of those situations that does not have an easy answer. I think I could train Caleb to chill about the dental experience. I just don’t know if they will be willing to give it another go. You know? There’s this whole stigma attached to him now, and that just bothers me.

Feel free to chime in with any good suggestions. I do realize I had promised a happy post today, about Caleb’s new sport and such. Tomorrow! Check back tomorrow! This was a rough day, but good things have been happening too. Thank Heavens!

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