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.

🙁

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!

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!

 

 

 

 

Keppra Caleb: Dealing with Childhood Epilepsy

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I took this photo a few minutes after Caleb had his very first documented seizure. This was three years ago, in our backyard wading pool.

 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.

The boy loves his sleep:sleeping

 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.

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4 year old Caleb

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.

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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!

IMG_3024Caleb, age 6, at the Smithsonian Museum, with John David. 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

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