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!

 

 

 

 

Teaching my “ADD” Son

strategies for teaching ADD

 

I love how homeschooling has allowed me to cater to the boys’ individual gifts. I want to share with you what we’re doing to meet each boys’ gifts and challenges, so today we will focus on Caleb.

I realize home schooling isn’t for everyone, it isn’t even possible for many, so maybe you can apply some of these tricks to your regular-school-kid too! 🙂

It never ceases to amaze me how completely different all four of our boys are! I’m still waiting to see how JD will turn out. For now, we just know that he is go-go-go and clingy-clingy-clingy. We also know that he has some sort of sleep disorder that is destroying my outlook on life, but we are not here to talk about that today…

Let’s just focus on school.

Caleb is your classic Billy from Family Circus ‘boy’. He does the stereotypical stuff. He begs us for a pet, he finds snails and brings them to me, he pretends to dislike girls, and he’s always wiggly. Oh, and he loves to take things apart. He can also fix things that I cannot. If I want a chore done quickly and effectively, I call upon Caleb.

Spelling, memorizing facts, and sitting still are his nemesis. His Sunday School teacher recently referred to Caleb as “quiet and shy.”

???

That’s right. My children have one personality at home and a totally different one at school or Sunday School. I was quiet at school when I was a child too, only I actually am shy, whereas Caleb is definitely NOT shy.

The hard thing about teaching Caleb in the school setting, is that it feels like he isn’t participating. He NEVER answers questions, in a large group, and he talks and sings so quietly that you can’t tell if he is doing so or not. It looks as though he is completely disengaged–not at all like any of the other kids in the class.

As a parent, this is frustrating to watch.

I would love to design a school that caters to little “ADD” kids like Caleb–and guess what! I am doing exactly that this year–here at our own little home school!!  I have TWO ADDish boys, though even the way that ADD is displayed is different in each of them!!

Here is what is helping with Caleb so far:

1. Fidgeting is 100% REQUIRED!!!

If I am going to be teaching something new, or going over memory work, Caleb absolutely HAS to have something in his hands to work on. For example, if Alan is teaching a Bible lesson to the boys, we say, “Caleb, go get your puzzle!!!” Caleb fetches his U.S. puzzle and works on it while Alan teaches. Suddenly he becomes interactive Caleb with questions.

How did I figure this out? Classical Conversations. After the agony of watching my smart little boy act as though he doesn’t know anything all morning, we went outside to paint. Thankfully, it was a laid back painting day. The kids were allowed to use whatever colors they wanted–kind of a big deal for Caleb.

Meanwhile, Caleb’s tutor opened up her science book and started teaching from it. Suddenly, Caleb became interactive Caleb, asking questions, and looking happy.

The key seems to be that Caleb has to be working on something with his hands to pay attention. I totally get this!!  When I was in school, my notebook was always FULL of doodles. I do the same thing in church. Normally, I dislike drawing, but I just have to have something to do with my hands when I am in the school setting.

And what do we typically tell small school children, during instructional time? Everyone clear off your desk, and no fidgeting. HA!!! Perhaps that is best for most kids, I don’t know. I don’t have ‘most kids,’ I just have these kids, and I want to do whatever works to make school easier and more fun for them.

2. Frequent breaks.

Caleb completes a subject, then he has a break–sometimes a drawing break, sometimes a full-jump-on the trampoline recess. With all the rain we are suddenly having, he plays in the garage a lot. I would much rather knock all that school work out at one time, but that leaves Caleb looking like a whiny lump in the floor, so I get about an hour of work out of him at a time.

Caleb’s Basic Day:

Math Worksheet (A Beka 2nd grade)  He is excellent at this–straight As, and he thinks it’s easy.

Spelling

Notebooking: writing, copy work, etc.

BREAK–Full 20 minutes

Grammar/Phonics/Guided reading  We are really enjoying the A Beka readers now. They are full of sweet stories that almost all have wonderful life lessons. Love. Love. Love. Caleb also grasps grammar rules with swiftness. Phonics has been a struggle, and he’s still improving in reading. Thankfully, he loves Treasure Chest. He recently finished reading Pinnochio in that reader.

Review Memory Work (Science/History/math/grammar)

BREAK  a long one, while I work individually with Joshua

Math Speed Drills

LUNCH

Teacher Reading (where I read one nonfiction science or history story, followed by one fiction story or chapter or two)

Handwriting–Caleb’s favorite subject with Drawing (Most of the lessons in PreScripts include a drawing lesson.

Geography–We have now graduated to actually drawing the maps, rather than just tracing. I can’t tell you how challenging, but fun this is!

Go over whatever else we missed during the day, and then I NEVER let school run past 3pm. Usually we are done by 2:15.

Why does it take me so long, when I only have three students??  Well, let’s not forget this guy:

 

Our school comes with a TON of built in distractions, but that also makes it more fun.

I am fortunate. Even though we are always at home, the boys still have three friends to play with all the time:

 

 

 

That’s right. Sweet Dan can also do a mean scowl.

Joshua picked out his and J.D.’s clothes, and then they all decided to dress alike. They were a little disappointed that J.D. would not cooperate for group pictures.

When you have big brothers, you learn the back arch fit extra early.

 

 

 

 

 

3. Experience Learning: I think with anybody, ADD or no, actually going out and experiencing things is much better for learning than just reading about it.

What did I set out to teach the boys in these photos?

You might guess table manners or ocean life, but that wasn’t really what I was thinking. I set out to teach them about Black Friday. 🙂 Joshua, Caleb, Daniel, and I hit the mall and a restaurant in honor of America’s favorite day to shop. We scored an awesome deal on Daddy’s present.

We also got the bonus of getting to watch the ocean waves while we ate our lunch. Science. 🙂

experiencing the beauty of California at a local ranch

More science. These are harvester ants. They are all female. They only produce a male when they wish to reproduce. I guess they don’t realize how funny boys are to have around.

Proverbs 6:6-8 (KJV)

Go to the ant, thou sluggard; consider her ways, and be wise:

Which having no guide, overseer, or ruler,

Provideth her meat in the summer, and gathereth her food in the harvest.

Did you catch that?? Don’t miss it! Solomon is known for the wisdom God gave him. The Bible is the inspired Word of God. They called EVERYTHING “he” or “him” back then.

What did they call the ant??  HER

Don’t miss that. The Bible is CHOCK-FULL of wisdom that is way before its time.

Isaiah also wrote a verse that showed inspired wisdom about “the circle of the earth”, back when we’re told they thought the earth was flat.

21Do you not know? Have you not heard? Has it not been declared to you from the beginning? Have you not understood from the foundations of the earth? 22It is He who sits above the circle of the earth, And its inhabitants are like grasshoppers, Who stretches out the heavens like a curtain And spreads them out like a tent to dwell in.   Isaiah 40:21-22

4. Let’s talk about memorizing. 

Unfortunately, I have not unlocked that padlock for Caleb yet. He does well with the truly catchy songs, the Bible passage, and the things that I have managed to go over a gazillion times, but I want to find a way to make it easier. I have learned ALL of this stuff fairly quickly, without going over it a gazillion times, and I am old. Some of it was completely new to me too: like the Latin….and the specific Appalachian mountain ranges. I would love more memorization tips for my little guy who hates memorizing!!!

I think part of the problem is that he thinks it’s boring, so perhaps what I SHOULD be asking tips for is how to make it more interesting to a 7 year old.

5. Focusing on the GIFTS

In order to keep Caleb happy about school, I have to praise, praise, praise every thing he does well. He leaps up the stairs to come to Handwriting, Art, or Math Speed Drill time because those are things that he has received lots of praise for.  Caleb is so creative. It’s so easy to praise him for his arts and crafts achievements.

Obviously, I need to praise him more on memory work!! I was really impressed today with his excellent Latin translation skills. That was all thanks to how well he learned John 1:1. The boys are currently memorizing John 1:1-7 in Latin. Caleb has already done a pretty good job of memorizing it in English. Caleb was actually able to teach this week’s Latin to Joshua. Now THAT was exciting!

What helped him learn John 1:1-7 so well? I made him copy it during notebooking time. That lets me know that Caleb learns through writing things down, which makes a TON of sense, since he learns through fidgeting!!!

Hmmm…I need to employ more of that!

6. Trampoline Memory Work

This is my next idea!!! Maybe trampoline spelling and trampoline math drills too!!

7. It’s really all about the one-on-one.

ADD kids need one on one attention more than their wired-perfectly-regularly counterparts. That’s where home-schooling is paying off BIG TIME.

You may be tempted to think ADD is not a “real” thing. As a psychology grad-school drop-out, let me assure you that IT IS INDEED A REAL THING. In the old days, they may have just said, “That boy ain’t quite right.” Haaaa!  The thing is now we know why. Our brains don’t all work the same.

Aren’t you glad they don’t?  😉  I bet some of the greatest creatives of all time were ADD.

8. Teach to the level of the child. 

This is another benefit that I have. Even some public schools do this. Where my children went to school last year, they divided the whole 2nd grade up into spelling classes. Some kids in the second grade were spelling hop, shop, pop. Others were spelling shook, shake, shriek, or whatever. You get the idea.

At the beginning of the year, both boys almost cried while working on material that they were not ready for, and school felt like a battle. As soon as I switched the curriculum to their actual level, they began to learn without tears. This is the best thing I’ve done for them. In the long run, they will actually be better at these subjects, since they took their time, and learned it step by step, rather than feeling lost all year.

Teaching to their level made my life so much easier too. I don’t have to battle them on any of our subjects–other than just “Can we be done now?” Gone are those first few weeks of, “I can’t do this!! It’s just too hard!!!” Okay, occasionally they still say that, but only when they are lazy or in need of a quick break.

I always wondered why home schoolers got that deer in the headlights look when you asked them what grade their kid is in!! It’s because at any given time Child A may be in 4th grade spelling and reading, 5th grade history, geography, and science, mid-2nd grade math, and 3rd grade grammar and handwriting…..but yeah…he’s in 3rd grade.  LOL!!! That’s the awesomeness of the one-on-one.

Anyone else have any good ADD tips?? I know there are plenty of teachers out there that could help us!!!

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