Epilepsy Update

I scrolled through my posts this afternoon and clicked on Here we go again. I'm so glad I took the time to write all of that down. Those feelings and fears have somewhat faded. I don't flash to his tonic-clonic seizure when I sweep that part of the kitchen or put shoes in their cubby anymore. I leave him home now without too much thought. The thought is always, always there, but I pray every day to help keep him safe and allow him as much normal as possible at the same time. However, reading through it all brought me right back to that moment and reminded me of the emotional journey we've been all been on. That truly was just the beginning and I decided to take a minute and give a little update.

I'm happy to report Kaleb has not had any seizures since that night. He is just over eight months seizure free. I used to count the time Kaleb was seizure free as if it meant something. I felt the longer he went without a seizure, the chance of having another one went down. I learned the hard way that wasn't necessarily the case. Kaleb had been four years seizure free (two off meds). I thought he'd outgrown them. I thought we had gone through the seizure woods and stepped into the seizure-free-for-life sunshine. I was wrong. At one of our neuro appointments, our doctor told us that when it is someone's time to have a seizure they will have a seizure. To make matters worse, we never know if the meds worked and stopped working and a seizure occurred or if the meds never worked and it just wasn't that person's time to have a seizure. How am I supposed to wrap my head around that piece of information? I'm not sure I ever will. But, for now, he is seizure free and I'm grateful for that. He's driving again and living a normal life. I am terrified. Not gonna lie.

The road to now has not been easy. The meds the ER started Kaleb on is called Keppra. If you are in the epilepsy world at all, you've probably heard the term Keppra Rage. Our neurologist described it as an emotion magnifier. It took everything he was feeling and poured gasoline on it. He was hurting so much. It was heartbreaking and so very difficult for everyone. I won't go into details of that time here. It isn't really a place I want to revisit. However, I don't want to forget it either. It was such a difficult, dark time and some days I wasn't sure how we were all going to get through it. It. was. hard. But you know what? We made it through. We walked through it and I think we are all better for it. We spoke with our neurologist about changing his meds and began the switch. However, it ended up being a two-month process. You can't just stop one and start another. Slowly the rage left and he worked through what he was going through without the extra emotional fuel. He also reconnected with his birthmom during that time and I think it brought him a peace he really needed. That's an entirely different post that I most likely won't share--it's his story to tell.

Kaleb had six-month check with his neuro this week. I had six months worth of questions and one was if these new seizures were related to his first diagnosis or completely different. (He was diagnosed with childhood-onset absence seizures and in Feb 2018 he had partial complex and a tonic-clonic). He said Kaleb was just unlucky because most don't have both. That sucks. I'm really not complaining, though. So many live with uncontrolled seizures and deal with so much more. I keep you all in my prayers, by the way. I truly do. You fight the battle every single day and night. We call you warriors for a reason.

So, in our home, we live like epilepsy isn't hanging out in the closet, waiting for a moment to strike. We set alarms to help remember to take meds and send texts threatening to call 911 if he doesn't respond. Seriously, kid. You need to respond! ;) We make plans to go to the beach and spend hours attempting to figure out geometry while we countdown to the end of high school math! We watch for signs, hug our children tight, and pray our epilepsy guest stays comfortable in the closet.

Here We Go Again

When my oldest was a toddler, my friends would give me a really hard time because I followed that kid everywhere. As a new mom, I already had a couple suitcases of baggage. I had the normal new mom suitcase, plus adoptive mom suitcase and the most painful one of all, the broken-hearted mom suitcase.

For me, the new mom suitcase carried my insecurities and learning curve. I was figuring everything out and second guessing everything I did. To be fair, mine was probably bigger than most.

The adoptive mom suitcase held a higher standard. You said you could do this better than most. I not only felt accountable to my Heavenly Father for my parenting choices but also to this amazing birthmom who trusted me to do something she, at the time, couldn't do. No pressure.

The broken-hearted mom suitcase is where I tucked those devastating moments when I found out the baby we had longed for, and fought infertility for, would not survive after birth. It's where I held the undeserved blame I placed on myself...I missed taking prenatal vitamins sometimes and I didn't eat balanced meals when I was so morning sick, and I...blame, blame, blame. It's where I placed the memory of my empty arms that physically ached as they wheeled me out of the hospital. It's where I shoved the moment we had to say goodbye and place his little body in that tiny casket. It's where I shoved the huge part of me that never, ever wants to lose another child. That bag was cram-packed full.

See. Baggage. When that little toddler of mine would fall, he fell hard and there was usually blood. He rarely caught himself with his hands. It was traumatic for him and for me. So, I followed him and took flack for it. I wished I could say I didn't care. I did. But, it didn't change anything. He was my priority.

Fast forward five years. Kaleb is in Kindergarten and that spirited little boy was giving his teacher all kinds of trouble. That's where the label started...he probably has ADHD. I remember one day he was sitting at the dining room table. We were in a homework battle. I'm sure I was losing. He got this weird look on his face. A blank stare. Like the life behind his eyes was switched off.

     "Kaleb." No response "Kaleb," I said a little louder. No response. "Kaleb," louder still.
     "What?" he said.
     "What were you thinking just now?"
     "I don't know."

That was the day I pushed that momma warning...that intuition...that prompting aside. You are a helicopter mom. He's fine. Get. A. Grip. I felt something was wrong and I talked myself right out of it. Besides, he had ADHD. We always called his name several times before he listened. Right?

Before I knew it, that kid was about to start middle school. It really went that fast...well, and painfully slow, actually. School was rough for him. It was rough for me, too. I dreaded the phone ringing or a new email. Something was always wrong. He was always in trouble. But, now here we were, about to embark on a new adventure (that truthfully, I knew was going to be filled with disasters as well, but I was hoping somehow the changing schedules and teachers would be a good thing...insert eye roll here.)

...Now, let me interject right here. I love teachers. I love everything they do. Everything they are about. I really believe they are asked to do the impossible. Sometimes public school doesn't work for a kid. It's not the teacher's fault. It's not the kid's fault. It's not the parent's fault. It's just not what is best. End. of. story.

Ok, back to middle school back to school night. We walked up to the Principal who was welcoming everyone. Kaleb and I both shook his hand. The Principal asked if he was excited and he didn't answer. My new found southern manners kicked in and I opened my mouth to prod him to be polite and answer the man, but when I looked at him, I knew something was wrong. His eyes were fluttering slightly.
    "Kaleb?" No response. "Kaleb?" Again no response. "Kaleb?" He didn't respond but walked off. Just walked right away into the crowd. I called his name louder. He turned, confused, and walked back. He stuck his hand out to the Principal to shake his hand, again. I knew something was wrong. The Principal didn't acknowledge the moment at all. He moved on to the next child. I wondered if I'd imagined it. However, this time, I listened to that something is wrong prompting.

I called our pediatrician the next day. I should back up for a moment. In my life, I have felt Heavenly Father's hand continually. One way is through people put in my path. When we lost our son, years before we had been blessed to know two families who had lost children and they were such a help to us. When we decide to adopt, the same thing. People were put in our path who helped us so much with the process. Those are just two examples of many! So, when we found out our new high councilman (clergy in our church) was a pediatric neurosurgeon, I literally turned to my husband and said, "I sure hope that man wasn't put in our path because we are going to need him." Tender mercies. After our visit with our pediatrician and she suspected seizures, we called our high councilman/pediatric neurosurgeon. He recommended a neurologist and read our first EEG for us. He calmed our nerves and pointed us in the right direction to get him the help he needed. Tender mercies.

Kaleb was diagnosed with childhood-onset absence seizures. What that meant was his brain would pause multiple times a day for ten seconds or so and then unpause. Some people call them staring seizures. They are so hard to see. So hard. They do not cause brain damage and medication was recommended mainly for quality of life. Imagine trying to learn a new math concept and skipping ten seconds of the teacher's instructions every now and again. The great news was he would most likely outgrow them.

He was on medication for two years. At his two year appointment, our neurologist recommended suspending meds to see what happened. Kids usually outgrew these types of seizures. It was a good time to try...he wasn't driving yet etc. We stopped the meds and for two and a half years we didn't see another seizure.

But, one evening he began acting really strange. He wouldn't answer us and seemed out of it. He had been sick and we even wondered if maybe he had accidentally taken too many cold pills or something. At one point, I was pretty sure I'd seen an absence seizure, but it looked different than they had before...something wasn't right. It was after 5:00 so our choices were after-hours care or the ER. We figured both places would tell us to call his neuro. So, we decided to take him to his youth activity that night and see how he interacted with his friends and call the neuro first thing in the morning.

We didn't make it to youth, though. He went to get in the car, socks in hand but no shoes.

     "Kaleb. You need your shoes. Get your shoes."

He turned and went back in the house to the shoe cubbies just inside the garage door. I went to put my stuff in the car. A scream from the kitchen, my husband yelling and crashing stopped me in my tracks. I ran into the house to find Kaleb having a tonic-clonic seizure. The Lord has said, "If ye are prepared ye shall not fear" (D&C 38:30). I knew what to do. I had read everything that came my way when he was first diagnosed. That knowledge kicked in.

I turned him on his side and told my husband to time it. I knew time was important. But, this seizure was so much more than I had anticipated. I'll never forget the expression on his face. And, he seemed like he was really struggling to breathe. I began to panic. "Call 911," I shouted. I knew to turn him on his side and clear the area. I did not know what to do if he stopped breathing. Well, maybe I did, but I didn't feel like I did. We had been CPR certified three times for our three adoptions...having someone on the line who knew what to do sounded really good at that moment.

We think his seizure lasted around five minutes. Maybe less because the seizure stops when their body stops jerking (the clonic part of the seizure) although he still seemed to struggle to breathe longer than that...it was a bit of a blur. A terrifying blur. The best paramedics in Lancaster county came a thousand years later (I'm sure it was much sooner than that!). It was all I could do to keep it together when they walked through the door. I didn't have to keep it together. They were here to be the brains. I could grieve what just happened to my son, right? Deep breaths. I held it together.

My sweet girls obeyed my commands during all of this as well. "Open the front door. Move the shoes out of the way. Turn on the porch light. Direct the ambulance to our house. Take your sister in the other room." They obeyed and were so much help. They got shoes for Kaleb, packed my phone and charger in my purse and had everything ready for me when it was time to leave with Kaleb in the ambulance. They crumbled in their daddy's arms when we left. They held it together and then grieved what happened to their brother. Warriors come in tiny bodies.

Three hours later we were all back home. That sweet boy of mine was back. He was sleepy but wanted to be near me. Although he doesn't remember anything, that in itself was traumatic for him. Losing time brought a vulnerability he didn't know how to process.

Soon we had everyone tucked in and then I lost it. My husband and I held one another and cried. We know Kaleb will be fine. We know so many epilepsy warriors fight so much more every single day. We pray for you every single day. You are amazing. So many deal with so much more. Warriors.

We've had an EEG and an MRI. We have another appointment with our neurologist in a week. He's on medication and we haven't seen any absence seizures and he hasn't had another tonic-clonic. Thank goodness. Life is different though. We worry. Every day he feels a little more confident. That pre-tonic-clonic kid is coming back, leaving the clingy, vulnerable one behind. I'm so glad he's feeling better, but kind of miss that clingy kid. He was easier to keep an eye on. He didn't want to be left home while I picked up his sisters from school. This one does.

As his parents though, we keep replaying that night over and over again when we close our eyes at night or peek in on him sleeping. When I sweep the floor in the kitchen where he fell or put shoes in the cubby my mind goes there. My heart goes there and I wish it wouldn't.

On another note, I took a picture of Kaleb in the ambulance. I knew he was pretty out of it and would most likely not remember and what 15-year-old kid doesn't want some sort of memory of his first ambulance ride? I knew mine would at least. The next day when we were filling a prescription I couldn't fill the night before, we saw an ambulance.  "I feel like we should wave, Kaleb. Like we are friends now." He agreed. Now we wave.

Here we go again.