Category: Seizures

Around a month ago, I had the pleasure of Jack going to bed around 11:30pm. What a surprise, & to think all it took was an increase in his sleep medicine. We suffered for well over a year in the living nightmare with a lack of sleep & sanity due to what I blame on the trial of CBD oil or Epidiolex. That whole ordeal threw us a major curveball. We were so hopeful that CBD was going to be the answer for Jack & our family. Don’t get me wrong, it has helped many Dravet patients & other chronically ill individuals, it just was not for Jack.

For years, I have told Jack’s medical team at UNC that I think he is bipolar. When I would begin this discussion during his various appointments or hospitalizations, I was given strange looks & flatly told his behavior is 100% due to Dravet Syndrome. I just don’t think so. Jack has so many similarities to that of a bipolar person. It is not unheard of for folks to have more than one medical issue. We’ve all known people to have more than one diagnosis, so why wouldn’t the doctors hear me out & try bipolar meds? His symptoms fit the bill totally-highly excitable, moody, excessive talking, thinking the world revolves around him, down in the dumps, times of under & over eating, sleep issues either not enough or too much, & becoming obsessed with things. Since Jack was 8, I have thought he is bipolar.

During Jack’s last outburst which was in December of 2017 & he was hospitalized, he came home on Trazodone for sleep. It worked okay, not great. Depakote was also added to his long list of meds. His mood was definitely not good, but at least he was not being combative. I really hated to tinker with his meds any more since he is already on so much, but in May, I had had enough. I was staying up to 2-3am every night with him as I’ve stated in previous blogs. I emailed his neurologist who agreed to increase the precious nugget called Trazodone & it has helped in a major way! Since the increase in the dosage of Trazodone, Jack has been out of the house more in the last two weeks than in the last nine months altogether. This increase has been a blessing & a hinderance at the same time. Blessing in that he is becoming more like his old self, going to sleep at a decent hour, become more engaged (way engaging), more interactive, & wanting to get out of the house some. His wanting to get out is sporadic & still only on his terms. I bet you are wondering how any of this could be negative right? Well, with this increase in the Trazodone, he has become obsessed with me & I assume it’s because I am the main caretaker. I can not have any time to myself or with Lee or with Coleman & Ava as long as I am home. We can’t spend time as a family of 5 because Jack aggravates the kids so, they dissipate to their safe place, their rooms. Lee & I are forced to watch Blue’s Clues, Night Rider (yes, the show with David Hasselhoff), or Batman the tv series from the 60’s with Adam West & Burt Ward. We have zero time to ourselves. There is no more watching our favorite DVR recordings such as Below Deck, Diners, Drive-Ins & Dives, or something I recorded on PBS that is interesting for us farmers. Every minute is about Jack. It is great that he has become more active & a little less obsessed with the phone & computer, however, it is annoying because everyone needs time as a couple & to themselves.

How did this medication do this you may ask. Well, Trazodone as it turns out, is a medication that can be used for bipolar patients who suffer from a lack of sleep & Jack just so happens fits the bill. I am beginning to wonder if my theory of Jack being bipolar is correct. This is one of those times you want to stick your thumbs in your ears, wave your fingers, stick out your tongue, & say ‘nah-nah-nah-boo-boo’ to the doctors.

While experiencing this new phase, one night last week I was sitting on the porch trying to steal a few minutes of alone time, but no such luck. Jack comes out at 9:30 & wants to get the paper. To put this in perspective, here’s the story. Our local paper stopped home delivery for us last summer (2017). Jack suddenly wanted to go out & get the paper for some reason. Now this is a task he often did for me everyday. Last week was the first time he noticed there was no longer a paper box in our yard in over a year! It’s so hard to believe the changes we’ve seen in this young person in his few years. On that night Jack went to get the paper, he also wanted to ride to Carroll’s Pantry which is a convenience store in the area. He wanted a drink. We rode to get one & then I rode out to our local baseball/softball field in town & there was a game. I love to watch & play ball, so we pulled over & watched a little of the game. He wanted to get out, but I was too afraid the crowd & excitement would be too much. Jack & I stayed out for a whole hour that night! While writing this paragraph, I am reminded of the book, ‘If You give a Pig a Pancake’. I swear I’m going to write an adult comedic version of that story one day titled “If Jack comes out of his Room’.

So tonight Jack wanted to go to Sonic. He had this planned out to sit behind me so he could get out of the car & press the Sonic red button to order & swipe my card. Pressing buttons is highly important to our children (think they may of gotten that from me), I always wanted to work at the Food King grocery store when I young…something about pressing those buttons on the cash register intrigued me. After the order was placed, card swiped, he got in the front seat & prepared to chow down.

This week, Ava attended a local camp. Jack got a wild hair the day before she was due to come back home. He looked the number up & called them! I heard him talking to someone in the office about giving his sister Ava a message to make him something while she’s at camp. This is a smart kid, makes you wonder what he would do with his life if he were a regular kid. He is a savant in many areas. He knows many facts about celebrities (mainly dead ones), old music, dinosaur facts, things about countries most have never even heard of. He even bought a British flag for us to hang outside of his window-which was a purchase prior to the Harry/Megan mayhem.

This life is ever-changing, it’s difficult, hard, funny, weird, sad, aggravating, & everything in-between, I just never thought we would go through the changes Jack has experienced so deeply. Maybe we needed to go through all that chaos to get to this point. For now, we accept this change & look at it in a positive light…mostly.

How was your morning?  Probably a lot better than mine.  I think mornings were created to be peaceful & relaxing.  I have an image in mind of what a perfect morning should be.  Waking up around 7:30, cooking a big breakfast for everyone & enjoying that breakfast outside listening to the birds, then head to The Berry Patch for an entire day of work.  Our life is so far away from that it’s not even funny!  Since the birth of Jack, a calm, peaceful morning has yet to occur.  Coleman nor myself really care for breakfast, however, Ava does.  Poor thing has to wait until Jack is awake & situated in his room before eating (more on that later) because if he hears noise, he’s up.  What it is like to live a day in the life of our family?  It’s not as cool as I try to make it seem on social media.  Let’s face it, most of us are not going to post the negative, only the positive which is a good thing.  Maybe you want to hear it, maybe you don’t & that’s fine too.  Let me give you a run-down of our daily activities:

6:30am, Lee’s day starts.  8:30am, I awaken, but am held hostage in my room so Jack won’t hear me & wake up early; 9:30am Jack wakes.  Coleman & Ava are still in their rooms behind a locked door because Jack may go upstairs & that’s never a good thing.  When Jack wakes, he comes bounding out of his room slamming his door repeatedly, when he tires of that, he starts stomping through the house-to the point where knick-knacks start falling.  He runs back to his room, but not before gouging his fingers in my stomach for a mere 5 minutes.  No amount of talking him down from this act makes him stop.  He likes to think he is a Tiger Sword Power Ranger & he is clawing at his victim.  Shortly after a quick reprieve in his room, he’s back out again playing music as loud as possible & singing, following me wherever I may go.  Now it’s 10:30am & I am just able to start doing what many were able to do hours ago.  I’m late washing clothes, opening up the house, straightening the house, washing dishes from the previous night because Jack was being particularly aggravating.  Once his medications kicks in, most days I’m given a few hours of complete & utter silence from Jack.  He stays in his room for hours sitting on his bed on the computer or iPad.  I want you to think about that for a second.  There are days (although limited these days), this boy does not come out of his room for 10 hours.  Can you imagine not having any physical limitations as far as walking is concerned & not getting out of the bed for over 10 hours straight & he voids only one time a day, everyday.  Jack has gotten some better about wanting to have his bedroom door open, but a lot of the time he wants it shut.  I sometimes go in his room & sit on his bed & think how sad of a life this would be for myself behind four walls.  He is staring at some sort of screen for hours on end behind a closed door & tv off.  Such a sad life for us to watch this, he doesn’t seem to be unhappy though.  Jack goes through so many extremes.  He is either extremely talkative or doesn’t murmur a word, either hyper or so subdued a house fire couldn’t get him up.

In the early afternoon hours, I really don’t see or hear much from Jack.  I am able to do some catching up on my shows, reading, spending time with Coleman or Ava.  Then around 7pm, I start with supper.  We eat around 8-8:30pm because The Berry Patch doesn’t close until 8:30 every evening.  Lee’s days are often 14 hours long.  I know it’s a choice in what we do for living, but it’s really hard on Lee not being able to spend time with the kids, myself, & having the burden of working every single day from sun up to sun down & being the only provider for our family.  When he gets in, he eats & goes to bed shortly thereafter & that is when Jack starts!  He has vampire hours-I’m starting to wonder if vampires are real!  You can set a timer to when he comes out of his room, 10:00pm every night & he is doing the same to me at 10pm that he was at 10am.  Everyone retreats to his or her room because he’s so aggravating to us all, I’m left to deal with his antics.

10pm is a busy time for me.  Most folks are getting ready for bed, I’m just getting started making cobblers or dipping chocolate covered strawberries for our business & Jack is distracting me & right in the middle of it.  10:45pm medication time.  11:15pm, Jack’s in the living room watching Blue’s Clues.  When it goes off, he pretends he’s asleep.  Why me Lord!  I have to beg & plead for him to get up & go to his room.  Finally, he goes after I make it into a race to see who can get there faster.  Guess what?  He’s wide awake!  I close down the house & leave Jack in his room alone to let the medication work its magic (hopefully).  12:45am, the house phone rings-it’s Jack!  He wants me to fix him something to drink.  I take the drink & 15 minutes later, he’s asleep.  Jack falls asleep every night with his computer on his lap, music going, iPad on.  Cleaning off his bed a night is a chore, Power Ranger toys are piled up on the bed, all those electronics, the bed is just a mess.  We were able to increase the dose of his sleeping pill which has helped with an earlier bedtime so much.  However, I am having a difficult time getting to sleep earlier than 1:30am because of the 3am & sometimes later bedtimes he was having for close to a year.  I’ve got to readjust somehow!

Jack finally falls asleep at 1:00am; 1:30am-Amy falls asleep;

How was your day?  Lol

What is really sad, Ava has two friends over today, when they got here, I had to give them the rules.  No talking downstairs because we don’t want Jack to come out.  He would try to go out to the pool & terrorize them.  They can only talk outside & upstairs.  Now can you imagine what these preteen children must think.  It breaks my heart & I know it does Ava’s that she won’t ever be able to have sleepovers with several girls at her house because of Jack.  She & her friends will never be able to run freely through our house like girls do, make a mess in the kitchen, freeze their bras (do girls even do that any more),  or have makeovers.  Dravet has robbed our family so much & continues to do so everyday.

I get tired of the constant planning.  If I have to go to the grocery store, post office, whatever, I’ve got to get someone to stay with Jack.  I despise being on such a rigid time schedule depending on others to help me tend to Jack.  I feel bad for inconveniencing my Mama & Daddy or Aunt Ruby while I run errands or work.  I know they don’t mind, but it is distressing & almost embarrassing to keep asking.  It’s always, let me hurry & do this so I can get back to house.  Lee & I can’t go anywhere together unless it’s something really important.  Everything I do is timed out.  I get tired of that.  No matter, that’s how it has to be for now.  Enjoy life simple inconveniences such as breaking a glass,  burning your toast, or even breaking a leg…I’d take those things any day!  You never know when a hurricane will blow into your home.