Kerri’s Story

 THIS IS US 2.0

The worst kind of defining moment dropped a paralyzing focal seizure in our laps as we waited for a cab in a thunder-storm. Our beautiful animated child stiffened up, his eyes rolled to the right side of his head and he mentally disappeared for what felt like an eternity. We waited for the ambulance for twelve minutes through symphonic rain and active ignores from bystanders . Then we waited even longer as our baby lay on a gurney in a narrow hallway of a busy center city adult ER to finally look around, nod his head and, after two mind numbing hours, begin to speak.

The doctors told us, everyone gets one. Literally, everyone gets one seizure. The simplicity of the statement relieved and confused us after the terrifying night we had just had but we took it as the easy out we desperately wanted and eagerly went back to the hotel to put the whole incident to bed. That night as he slept between the two of us, heavy in his mental exhaustion, Dave let down and cried for the first time since I had known him. We both held Buddha and shook until the sun came up. Then we got up, got dressed and moved on.

For a while.

A French bilingual preschool was a huge check off the list and then an amazing apartment…I mean crown molding, fireplace, and 2 bathrooms in the nicest part of town amazing, this was the welcome I expected. It was starting to feeling like it was all predestined or something, and I felt right on track. I’m a sucker for things falling into place without too much strain. I don’t mind the hard work but worry when it starts to feel like I’m forcing fate, bending it to my will. That never ends well for me. This was not that though, everything clicked. Transition mastered, score one for me!

With all good stuff set in motion, Dave loving his job, and the celluloid vision of a PA fall pulling the pieces together in a montage of awesomeness, Buddha and I were getting on a plane to visit my oldest and best friend for a quick trip to California to celebrate her 40th birthday when, without a breath of warning, time stopped again. Buddha had his second seizure just as we were getting into our seats. Eyes to the right, body stiff, apple half way down his gullet, dead to the world. Scary as hell. The seas parted as we were hauled off the plane, wheeled into our second ambulance and introduced to the magic that is CHOP, Children’s Hospital of Philadelphia. He was officially diagnosed with epilepsy, given his first of endless medications and sent home within 20 minutes of being given the script.

We were back on the same flight the next morning, but he was never the same again.

It was not a fun trip and I drank my way through most of it because none of the other kids were having seizures or violent melt downs like mine was. When they prescribed the Keppra, which worked great on the seizures, they forgot to mention a little thing called Keppra Rage. He went nuts! He began yelling and screaming at me, acting irrational, calling me names, throwing everything within reach. Striping the bed and jumping on it maniacally while coming up with creative and nasty ways to defy and attack me. And his eyes, I can’t describe them except to say, it wasn’t him. His sweet angel eyes were gone. His angry sudden reactions mounted to levels I had never seen! Tantrums that could out perform Shakespeare’s best deaths, and nasty fits over naps that seemed excessive to even my effusive little actor. All completely out of character for my sweet, enthusiastic, maybe slightly hyper, but never mean child. I suck at surprises, prepare me or prepare to feel my wrath, and this came out of nowhere. I felt fearful for but also embarrassed by my son. I couldn’t wrap my head around how unacceptable the whole thing was! The embarrassment I felt is a shame but a truth I feel in my skin still today.

That trip was awful for me but it taught me the first and most important lesson about being a special needs mom, although I didn’t realize nor would I have admitted then, that’s who I had become. Overnight I became an advocate, CEO of Buddha INC. As we were walking down a pier with a handful of friends and their kids, all enjoying the day and the company, reveling in the quaint Pacific Coast town and admiring the picturesque gaggle of goofy kids, I realized mine was suddenly nothing like the others. As my son almost fell through a hole in the boards down into the autumn ocean 100 yards from shore because he was antagonizing his peers and jumping on the rickety parts, I became instantly hyper vigilant, prepared to rescue, defend or explain actions, behaviors, or seizures. My mom instincts instantly heightened to catch every nuanced detail of my child’s breathing, eye contact, body movement, words, and actions. I became hyper vigilant and present. I realized in that moment that I to make sure he was safe and accepted, that there is a line he may not be able to see but he couldn’t cross, and it was up to me to be sure he didn’t or he would be lonely, left out, or worse hurt. And I realized it was my job to make sure he never felt like any of it was because he did something wrong to deserve this diagnosis. There is no wishy-washiness allowed when being the spokesperson for your child’s personal wellbeing and trying to help keep him alive. This disease is a cruel experiment at best, so I had to know my boy.

All of that, of course, happened in a split second and I crushed it down with drinks and smores and held him a little tighter at the bon fire and we went home hoping for the new beginning to begin again.

Over the next couple months we rode parallel to but didn’t become fully embedded in sick kid life. The diagnosis of epilepsy was not a diagnosis we related to, wanted, or knew how to own. Doctors, and friends who had scoured the internet, reassured me that most children, something like 70%, are seizure controlled with one medication and that epilepsy is very common. 1 in 26. It might take some trial and error to find the right one as there are over 100 meds, but once we did we would go on as if nothing had changed. We learned that everyone has the capacity to seize but that some people’s threshold is lower than others. We were made to feel it wasn’t really that big of a deal and I was willing to play along even though my gut was rolling waves of worry and my heart knew otherwise.

Keppra Rage, being apparent, was an easy catch and a good opener into getting my advocate feet wet. Funny, how the ER docs never told us it was a very real side effect to the drug. Another advocate mom lesson learned. But, the second I said something, Buddha was off Keppra and moved on to Depakote.

A couple of weeks after we started Depakote Buddha started having what we thought were ticks. He would hiccup in this strange guttural throaty way and then move on as if it never happened. By New Years, however, he was having them countless times per day, was constantly tired, and was a bit confused and spacey.

CHOP is a life line that will take me countless posts to expound on and gush over but this was our first introduction. An ER administration, the second blood draw (he’s never cried once), a flu test that involved a huge Q-tip and a lot of fearful crying, and hours in a room of blowing vents, murmuring nurses, and beeping machines that led to our first admittance to the ninth floor, neurology.

Long story short, after a two-day Video EEG and other test results, he had the flu and we discovered the ticks were, in fact, myoclonic jerk seizures for which Depakote doesn’t work. The meds were switched and we waited again. For 5 days everyone that walked in the room suited up with mask and gown and we began to slowly explore a disease that wasn’t as easy to abate as we originally hoped it would be.

It was only the third med though and we were reassured the next one should do the trick, He’d stopped seizing, and we were sent home.

Saved Again. No harm no foul.

Five days later we were back in the ER with a 3 minute generalized seizure, after having 2 at home, that involved more arm and leg shaking, the same head turning dead stare, and WooHoo, turning blue due to lack of oxygen. It’s awesome when there are so many people in the ER room you get squished to the back and almost out the door while they try to get your kid breathing again. Best night ever. So great, in fact, we thought we’d hang around and get readmitted to the ninth floor. I mean it had only been five days but we had really bonded with the nurses and were missing them. (Sarcasm aside, we do adore the nurses!)

I’ll never forget the night Dave in all humility and with a furrowed teary eyed face asked, “Is this happening to Buddha because we moved to Philly”? He wanted to be sure the move, which he took sole responsibility for, wasn’t the cause of this new sick life and the suffering my child was enduring. The suffering we couldn’t stop.

Nan, without even blinking replied in her quite strong way, lowering her voice just enough to make an impact, ease my husbands breaking heart and wounded conscience, and said, no. “No, Philly isn’t making Buddha sick.” She didn’t even crack a smile and her tone was one of answering a respected colleague not a frantic parent. I remember her tiny body, practically half of Dave, turning into him as if to hold him with her words. Someone so tiny holding all the love, fear and guilt a dad can ooze with just the gentle turn of her body. She was there through it all and we have been undyingly loyal to her ever since.

So, during this second visit, we were up to three different types of seizures and anther new med. In fact, this time, they thought we should try 2! So, just as our first Philly winter started to dust the streets with snow, we were sent home on Onfi and something else I can’t even remember. He was still having seizures, but non that were turning him blue, and we had Nan’s email tucked safely in my purse, so home we went.

Not scary at all.

A week later we hadn’t left the house because he was still seizing and he was confused and spacey and barely talking. Twice I had to administer his rectal rescue med because his seizures had started to cluster lasting minutes and coming five and six at time, one right after the other. He hadn’t been to school in weeks and I was on daily calls with Nan. By the third time he needed the rescue med, for which he had asked because he walked out the back door thinking he was throwing a piece of garbage away in the kitchen and had no idea where he was, I knew we were in trouble again. For the third time in as many weeks we were back in a cab to be readmitted to nine south for, truly, the worst 16 days of my life.

In the cab we asked how he was doing and Buddha said, “Not good. My brain is going backwards.” His statement left us stunned. Little did we know it would be the phrase we would continue to use long after it’s first utterance. The phrase we now base our lives around. We entered the hospital on that cold, grey February day numb with the unknowing and cloaked in fear. We packed for a stay with pajamas and phone charges, a bag of stuffed animals and a half of a piece of carrot cake. It was Dave’s 41 birthday.

For over a week he seized nonstop, what’s called status epileptics. This time with anther added seizure type, and one of the most dangerous, subclinical. With subclinical seizures there are no clinical or outward symptoms. We had no idea how long his brain had been lit up causing who knows what kind of damage. All we knew is it would not stop and he was slipping away.

For days they loaded him with heavy terrible drugs, and then loaded him with more, intravenously and otherwise. He had just turned 5. A month before we were in Disney World eating birthday cake with Mickey. Nothing worked. He was having at least one myoclonic jerk seizure every minute and his sub-clinical seizures never stopped. His background brainwaves were at 2. Average is 11! One day 7 they were loading him again with Dilantin but he just seized on and on.

And then, he couldn’t see.

And then, he couldn’t hold up his head.

And then, he couldn’t talk.

And then, he couldn’t stand.

And then, and then, and then.

He went toxic. Actually, they didn’t know what was wrong with him. It took them another two days to realize he was toxic. We were losing him. We went in for a spinal tap, another MRI, and so much blood work they were pricking the veins in between his fingers. He was a champ. The nurses couldn’t believe it. Kurt Cobain would have been impressed by how he ‘took the needle’. But nothing worked.

They were worried about genetic diseases, some weird scare with the pallor around his eyes, and other things too awful to talk about. In 10 days our child was stolen from us and from himself and all we could do was hold on to him and try not to think.

People began praying. We are not religious people, but believe me when I tell you how blessed we were by those prayers. Their collective energy was felt, and it helped.

We weren’t capable of prayer, we were in too deep, dropped too fast into survival mode to think about the next moment let alone healing.

When the attending neurologist at one of the top 3 Children’s Hospitals in the country tells you they don’t know why your son is presenting the way he is and his body is shutting down, seizing and painfully suffering you stop existing in the real world. You enter a plane parallel to this life but not in it. You see, hear, touch and smell but have no connection to the feelings or the sensations. You see yourself in the mirror and wonder at, are confused by, the reflection looking back. You wonder what would happen if you touched the mirror, you think you’re trapped behind the glass. More real behind the reflection than in front of it.

There was talk of inducing a coma, but they loaded him one more time, and on the 10th day he finally come out of status…with Keppra!

He was left with Ataxia, processing disorders, cognitive issues, and in need of major therapies. It took days for him to stand, and only with assistance.

And then, just as we were about to be released, 13 days later, he leapt off the bed and attacked me in such an aggressive hostile manner that if I hadn’t witnessed the previous 13 days of seizing I would have been 100% convinced he was possessed.

They wanted him to go home. They had done their job and stopped the seizures. Well, at least the status, he was still seizing. They had no idea why all of a sudden he lost his mind and spent hours screaming at me and threatening me and trying to physically hurt me. They couldn’t explain why none of the drugs were calming him down. They thought maybe he was delirious after being so sick and stuck in the hospital, they thought it was a reaction to how severely toxic he was, they thought maybe this was the new Buddha. They just didn’t know. To this day, they don’t really know. (Although I know, it was mostly the drugs!)

I broke down, finally, in a packed room full of doctors and residents, at least 15 of them since our son was such a “special case”. I explained through the hiccups and snotty-nose how they were sending us home unprepared to handle this new child. We didn’t know this child. He didn’t know himself.

How could they leave us so unprepared!

They kept him for psych evaluations and still no answers. Nothing helped, nothing clicked. There were just too many possibilities, the worst of which…brain damage from seizing so long.

We entered a month of daily rehab therapies. It was hell but the therapists were saviors. He couldn’t put two sentences together or hold a pencil, he was spastic and strange, loud, inappropriate and very often violent. Plus, he was still on 5 medications which were helping keep him out of status, thank God, but he still seized every day and…was broken.

His gross motor was better at the end of the 4 weeks. He was speaking again, but only with prompts and although his ataxia made his hands shake violently, he could pick up a pencil again. His processing was not a bit better.

Rehab was hard but it was somewhere to go. It was something we could do, an action towards life. After that though, we were left to make it on our own. Trapped in the house all day and with a miserable angry child who couldn’t function and sandwiched between the two of us at night so we could monitor every noise, every twitch, every seizure. So we could wake up and make a note of the time while we silently counted down the seconds and minutes until it stopped then crush against him in a drop of total exhaustion.

For almost 6 months, our son was possessed. He was violent, dangerous, erratic, and mean. We spent hours holding him down while he screamed how much he hated us and scratched our arms raw. We were afraid the neighbors would call the cops and we were all bruised and battered from head to toe. It would take hours to put him to sleep and the more tired he got the more he seized and the worse the behaviors escalated. We got a shrink, a social work, a behavior specialist, another psychiatrist, applied for secondary insurance (Thank you, PA) and set up wrap around services to come into our home to help me deal with him.

I asked about sending him away to a home. Don’t judge me, you were not there. They wouldn’t take him because his condition was medical not psychological. This went on and on and still no one knew why he was so far gone, they had never seen anything like it. Not like this. Maybe it was delirium, maybe it was the drugs, maybe it was the seizures, maybe it was damage. Maybe it was the combination of it all. No way to know. No way to fix it.

I cried, I pleaded, I cajoled, I screamed, I repressed, I smacked him, I drank, I lost it.

We hired Kathleen who would save my life by taking the brunt of his confusion and attacks, so I could spend more time loving on him. She tutored him, held him, scolded him, loved him, was a major part of his rebuilding and to this day is one of my dearest friends. We are family. And with her help, we got him settled enough that almost exactly a year after his diagnosis he began attending 1/2 day kindergarten. He had a marvelous teacher who was very understanding and he was given a one-to-one aide who was an idiot but kept him from falling off jungle gyms.

We continued behavior work with program call PCIT, Parent Child Interactive Therapy, that uses play to set boundaries and build relationship. It was a commitment worth every second of attention and I can’t recommend it enough. We were also seeing a psychological, OT, and speech therapists and he started to read and use his imagination again. He was even chatty on occasion. Buddha and I began reconnect and I was able to put him to bed a couple nights a week which was a huge step. By the middle of kindergarten he was telling me he loved me more than he told me he hated me and I began to see the real him under the drugs and lightning brain more often than not. He was alive and beginning to participate in the world again. He was still seizing two to 6 times a night.

We were given a miracle and we know it! He had just turned 6.

Epilepsy and a boy. Normal is as normal does.
2016-2017

He began reading, was still quick with numbers, and the kids at recess all seemed to enjoy his company. My mom came to visit. Dave’s mom came to visit. They said he seemed to be doing better. They tried not to let us see their concern, their grief. They went along with us as we celebrated his wins and never mentioned how his eyes were droopy and rimmed with dark strain from forcing his body to function through all the meds and the seizures. Praising his sweet remarks of love not commenting on his inability to have a conversation.

I began drinking vodka instead of wine at dinner. It was heavy on ice and I figured getting through the day was success enough so it was ok. Plus the nights were hard, sleep elusive, and I could always hold my liquor. I was not someone afraid of getting into it with life, so it was just a break I deserved. It was city living. Everyone drank. It was normal.

We began to accept that normal included extra tutoring and extra naps, but those were easy work arounds. No one is “normal” we figured, we can handle this. He’s not in status and he is stable. We thought, normal is as normal does and we kept living.

We played with meds. Sometimes it feels like epilepsy is a  cruel joke played by the Childish Gods of the Universe messing with us like mean elementary kids who fry ants with a magnifying glass just to watch them burn. We play with meds and watch our child’s mind and heart burn.

But there lay the hope, the possibility. The meds are all we have to keep us on this side of normal. Most of them don’t work if and if you show a bottle of medication to Buddha he will have some crazy rare side effect But it’s all we have. So, we play with meds. We added morning doses, we added afternoon doses, we upped doses. We got rid of Tomamax and threw out the Clonazepam because it had reverse affects, activating his aggression and confusion instead of calming him down. We tried CBD after many legally vague conversations in Nan’s office. When we finally figured out we just had to call Colorado, ironically enough, and the first bottle was shipped the next day, we were renewed. Sure, the dosing isn’t regulated, sure the batches are not always consistent. It had magic powers. We had seen the YouTube videos. We were really hoping CBD would be the news worthy story of the natural but controversial remedy that would cure our son. It was not.

We started researching Lamictal but wouldn’t pull the trigger for a few months because if it’s uptitrated too fast it can cause a skin rash that can kill you and we were scared! We began discussing a VNS device, which is even scarier. VNS is a surgery that connects an electric lead from a tuner near your heart to the vegus nerve which is next to the carotid artery. It sends electrical impulses to the brain to try and disrupt the misfiring synapses that are seizures. It has hit and miss reviews.

We’re actually still considering the VNS. Nan presented Buddha’s case to a panel of over 100 of the best neurologists in the country and, although there are no guarantees and can take up to a year to work, it was one of their recommendations. It’s risky and epilepsy is a craps game of risk vs. reward. You don’t get anything for free with epilepsy. Whatever you gain; less seizures, more cognition, more attention, you must sacrifice something for in return. Usually, emotional capacity or weak bones or bad teeth. Or just the fact you have to remember to sink handfuls of pills down your throat every day is enough to keep important of balance between quality of life and seizure control always at the front of our minds.

It’s weird that I was honored when Nan presented Buddha to the panel out of all the children she worked with at the time. It’s weird because if he wasn’t that sick he wouldn’t need that particular kind of Stockholm Syndrome attention. If he wasn’t that sick, we could be normal. But there I was, so touched we were chosen.