seizures Archives - Just Wait and See

Prayers Are Working – I Guess

December 4, 2013 by Ellen Moore Leave a Comment

Looks like the prayers are working – ugh. Catherine had a bigger “tremor” last night and they told Brian today that it looked like a seizure. They told him we would probably start a new medication tomorrow. Just now, she had a 25-minute “tremor” and it was so hard to watch! Usually we hold her so I don’t usually see her little face. I’ve only ever heard about people saying “their eyes rolled back in their head” and tonight I saw it. It was my little girl.

As I watched – significantly aware there were people in a control room watching her and me, I remembered back to a presentation I made at Christ Church in Charlotte. It was the same presentation I made to my home church in Severna Park. In Charlotte someone asked me “What makes you angry?” I replied quickly that I didn’t really feel anger. I went on to take the next question and stopped mid-answer and said out of the blue – “Seizures. Seizures make me angry.” They did again tonight. I hate them and they scare me and I wonder what is happening in her experience of it. Does it hurt? Does she want to be held? Can she hear me? And feel me holding her hand? Is anything I do making any of it any better?

Maybe someone here can answer those questions for me. For now, she sleeps like she hasn’t a worry in the world.

That’s right, Catherine. Give Mommy all those worries and you sleep in peace, little bug. I love you.

Prayers Are Working – I Guess

December 4, 2013 by Ellen Moore Leave a Comment

Maybe someone here can answer those questions for me. For now, she sleeps like she hasn’t a worry in the world.

That’s right, Catherine. Give Mommy all those worries and you sleep in peace, little bug. I love you.

My Pride is Leaking

July 27, 2012 by Ellen Moore 2 Comments

Brian and Catherine had three medical appointments this week. I’m picking up the pieces from a really intense new-biz week and the flu last week at work. And Sarah started a new school. In comparison to last, this week has seemed relaxing though.

One of the appointments Brian and Catherine had was to see our neurologist at Kennedy Krieger. Catherine’s been having more seizures and he finally suggested medication on top of the ketogenic diet. Catherine’s had 10 big seizures that required Diastat this year so far. Last year, her most ever, she had 13. So, at this pace, we’re poised to blow past that number by a lot. To medicate or not medicate? That is the question.

I hate the thought of Catherine on seizure medication. This is going to sound weird – and my apologies to any parent who has a child on seizure medication – but I have a confession to make. It’s a bizarre source of pride for me that she’s not on seizure medication. I don’t even know the analogue to that in the normal world. Maybe it’s being proud of your daughter for not being pregnant in high school? I just know whenever the docs and nurses do an intake and we tell them she has seizures this is how the conversation goes:

What medication does she take for the seizures?

Diastat for her big ones.

Uh-huh. And what else?

Nothing.

They usually look up from a clipboard or a computer screen at this point. Nothing?

That’s right. She’s on the ketogenic diet and we don’t give her regular seizure medications.

And that’s when the little tiny feeling of pride leaks out of me. Weird, huh?

So, now, Brian and I are supposed to be deciding whether to put Catherine on Kepra or not. And that’s bizarre, too. It wasn’t that long ago in medicine that doctors simply prescribed and the patient (or the patient’s parents) just did it. Not much “thinking” to be done. Now, everything is a decision in partnership. And that makes it harder on us.

I just watched a TED talk about this very dilemma while I was sick. Baba Shiv, the speaker in this video, studies how we make the choices we do. He speaks about the energy it takes to heal a body (it was cancer in this TED talk video) and how that can be disrupted with the energy it takes to decide aspects of your treatment. Studies have shown that too many choices make us less happy and Shiv posits that this can be true in medical choices as well. Watching this video, and using it as a foundation, one might argue we should just put her on the Kepra.

I sit for a moment with that thought, and I still can’t bear it.

I guess my pride is leaking more than I realized.

Why?

October 27, 2011 by Ellen Moore Leave a Comment

BRIAN! BRIAN!

I yelled up the stairs knowing the sound of the fan in the bedroom made my yelling futile.

BRIAN! BRIAN!

God, please let him hear me somehow.

How can I move to get the oxygen?

I fumbled with her head. Ugh – she’s lying in her vomit. I need to get the medicine. This is gonna be a big one. I need to get the oxygen.

Oh yeah – Sarah’s door is open.

SARAH! SARAH! GO WAKE UP YOUR DADDY!

Silence. Except the retching. And the gasping to breathe. And the crinkle of the plastic protectors lying under Catherine as I tried to move her body to get ready for the medicine sitting in a drawer a mere eight feet away.

SARAH! PLEASE GO WAKE UP YOUR DADDY! I swear she’s three years old going on sixteen and sleeps just like a teenager.

Set her down and just go get the oxygen and medicine. But what if she rolls off the bed? I can’t put her on her back.

Oxygen first or medicine? Medicine.

At least she pooped last night the nurse just told me in report, so the medicine will get in there and work really fast, I hope.

KY or the stuff in the box? The stuff in the box. I don’t have time to see if the KY is where it’s supposed to be.

SARAH! GET UP. GO GET YOUR DADDY!

“Why, Mommy?”

I finally hear the little voice. Instead of relief, I’m perplexed. Why? What do you mean, Why?

JUST PLEASE GO WAKE HIM UP!

“But why?”

Geez. How do I explain because Catherine needs oxygen since she’s turning blue? How do I explain a seizure? This will be the first one she sees in full force, I think. I just stumble…

“Because I need help, please.”

Sure enough, mere moments later, Brian rushed down, rubbing his eyes, wondering what he could do. By then, I had the oxygen cannula in Catherine’s nose. She was still in the bed, but the medicine was starting to work. The retching had calmed – at least for the moment. But her eyes were still shaking. Her body still quivered.

And I wondered to myself – yeah, what can he do? The reality is that that question sat beneath all my futile yelling up the stairs, around a wall and past a very loud fan purposely blowing to drown out the sounds of nurses moving around overnight.

There wasn’t much he could do by the time he got downstairs. He changed her linens as I held her. He gave me a towel to wipe her mouth. But mostly, he was just there.

A moment later, the retching started again. He was sitting on the bed beside us while I cradled Catherine in the rocking chair. As I leaned forward to put her body in a better position to vomit, he held her head. It really was helpful. Just by being present, he had helped. And then, because he was present, he was truly able to help – both Catherine and me.

After it all subsided, I went to wash out the tray in the kitchen sink. And there I realized that despite my ferocious independence – I really do want help.

Special Needs of the "Normal" Sibling

November 30, 2010 by Ellen Moore Leave a Comment

It happened again. Another seizure that required meds. But this one had a twist: Sarah wanted to be put to bed in the middle of it by Brian – and Brian was holding Catherine.

“Daddy put you to bed,” she whimpered at the door. That’s how she tells us who she wants to put her in bed. She confuses her pronouns, and it’s kind of cute – unless Daddy’s not available – and then it’s a relentless whine.

Ironically, I’d just had a conversation with a potential client and we discovered that each of us was walking this “parent of a kid with disabilities path.” He is way ahead of me on it as his son just turned 21. But he had told me the story of their daughter who is three years younger and had a hard time with her brother’s disability when she was about nine years old. Initially, she hadn’t. But as she matured, she became angry. She finally turned the corner when she got to go to a psychologist and realized, “You mean this is my very own doctor?” Seemed she had some “special needs” too.

That conversation played in my head as I knelt down to Sarah’s level. “Hey Sarah? You know how sometimes when you’re sick, you want Daddy to hold you?”

“Yes,” she nearly whispered.

“Well, Cackie’s sick, and she wants Daddy to hold her. And I want to hold you and put you to bed and tuck you in really special. Can I do that?”

“OK,” she accepted, and willingly let me put her down for the night. I said a quick “thank you” in my mind to my new friend for helping me remember that Sarah has special needs, too. Privately, if I really confess my deepest thoughts, I think I hoped this one conversation would spare us any anger when Sarah is about nine. Crazy, huh?

But then Sarah got up and came to the door again. “Daddy put you to bed!” she whined a little louder.

After asking me to videotape Catherine since we’ve not taped the seizures that require meds in a long time, Brian got up from his chair and began carrying Catherine to her room. “What are you doing?” I asked in confusion.

“I’m going to put Sarah to bed,” he said.

And I stood with the video camera, watching Catherine seize, amazed at my husband who calmly figured out how to balance all the special needs of both our girls last night.

Let the Data Show

November 24, 2010 by Ellen Moore Leave a Comment

We’re entering another phase where instead of being a mom, I become a scientist. Instead of snuggling and hugging and cheering, we will observe and track and analyze. I don’t especially like these phases, but long ago I learned that we all do things we don’t like, right?

Catherine has been having “episodes” every night, and they’re getting stronger and more frequent. Something wakes her and moments later, her little body is trembling. Sometimes it’s intense. Sometimes it’s mild. Sometimes it’s a steady tremble. Sometimes it pulses in waves. Picking her up used to stop them; now it just makes us feel better.

We had a sleep study done at KKI in July before her surgery and despite all the wires and equipment on her body, she finally fell asleep, but the data didn’t indicate any seizures. It indicated a mild obstructive sleep apnea, but no one seems too concerned about that.

Could YOU sleep with all this equipment on you?

So, we don’t call these episodes “seizures” – yet. Our nurses call them tremors. One even calls them convulsions. And one “episode” may have actually been a seizure that should have been medicated. Enough.

I finally broke down and made “the chart.” I have a colleague – let’s call him a friend, actually – who is in awe of the way we have to track data about Catherine. He’s responsible for analytics in our company, so for him to be in awe really surprised me. He’s helped me analyze Catherine’s eating data in the past, so we could show the county whether she was learning to eat or not. Data says she is. I actually like data.

When I pulled out the computer on a recent flight to see a client, I asked him how to build the chart in Excel. He starts everything with questions, so I tried to give the answers before he even asked. But one part continued to challenge his thinking.

“Wait, you really need to track 25 things?” he asked.

“Well, it may not be 25,” I said, “but it’s something approaching that. It’s not five – I know that.”

He asked some good questions and helped me at least figure out what to put on the x and y axis. What mom talks about her kid as relates to an x and y axis? He gave me some other tips and then left me to figure it out in greater detail.

My chart fits on two – did you read that right? – TWO – 11×17 pages and actually tracks 38 variables. That’s insane!

But what’s more insane is that we have to do this. I get that the docs need a better look at what’s happening. And I get that we’re waiting for another sleep study. (I’m sure that’s about whether insurance will pay for it). I also get that the data will hopefully show us a pattern. But there is a part of this that annoys me, frankly.

When we were at the sleep study doctor’s office, I suggested we needed to get several doctors in the room together to discuss the situation. Everyone was approaching it from his or her own view and specialty. No one was looking at the little girl and all the things going on in that little girl to think about what might be happening overall. Is it hormonal? Does feeding her wake her up and cause the episode? Are they actually seizures? I think the neurologist and the sleep doc and the endocrinologist and the developmentalist need to get together and actually talk – novel idea, huh? The sleep doc told us they probably couldn’t do that – but they could email each other.

What? You work in the same building!

And so the real reason I have to be the one who builds the chart, trains the nurses, tracks the data and then analyzes it is because I’m the only one who cares enough to do it. Yet, when I walk into the doctor’s office the next time – with my 38-variable chart filled out for weeks, the doctors will be impressed. And maybe, just maybe, they’ll get this thing figured out.

What Makes You Angry?

October 27, 2010 by Ellen Moore Leave a Comment

Years ago, I was giving a talk about Catherine’s life and how we manage to have hope through it all. At the end of the presentation, someone in the audience asked me, “What makes you angry?”

“I don’t really feel anger,” I replied. “I really don’t. I guess I’m lucky.” I surprised myself with the thought that I couldn’t honestly think of a situation that caused me to feel angry.

I went on to answer some more questions and then interrupted myself mid-answer for some other question I don’t recall now.

“I’m sorry. I want to go back to that question about anger… Seizures. Seizures make me angry.” I had realized I kept thinking about the question while answering the other more mundane ones. And I felt a surge inside me that nearly catapulted the answer forward.

I was somewhat embarrassed at having to go back to the question, but I felt authentic in sharing the reality of my experience, and I was glad for that. Last night, I got angry again.

I can imagine it’s hard to understand how a mom can look at her little girl whose body is out of control and feel anger. I’m not angry at Catherine in those moments. I’m angry at the seizure itself. Ridiculous, right?

But when they happen, they are the only thing in control and there is nothing to be done about it. Sure, we give the medicine we have on hand for such occasions, but that doesn’t work immediately, so we have to wait and watch, as the seizure rules the house.

Last night, I watched the seizure. And I watch our reaction to the seizure. We’re pretty calm. I imagined how someone would react if they saw us. I thought about my perception that they’d wonder how we can just sat calmly – waiting. They’d watch us go about our evening more or less and likely wonder why we weren’t running around in chaos like a TV drama, I assumed. Truthfully, there is a part of me that thinks we should run around in chaos just because that’s what you do see on TV when a medical emergency occurs. But reality is nothing like that.

I helped Sarah get dressed in her jammies. She wanted to play afterward with her medical kit, so I gave her shots in her arm and back and we talked about which ones hurt and which ones didn’t – all while sitting on the floor below the recliner where Brian held Catherine, seizing. Sarah listened to my heart with her stethoscope, and I watched Catherine’s foot twitch uncontrollably while Brian held her and waited for the medicine to work.

Little “Dr. Moore” got an emergency call. “I’m on my way! I have a stethoscope!” she said into the pretend 911 phone. I wished for a split second that someone was on their way with a stethoscope – or anything else that could make the seizure stop faster. I hate them. They make me angry.

Allergies waiting

July 25, 2009 by Ellen Moore Leave a Comment

Once again, we’ll wait and see…

Catherine had a severe respiratory attack on July 5 after going out for a bit of ice-cream to close the holiday weekend. We wound up riding via ambulance to the ER. Happy Independence, huh? Suspecting the ice-cream we let her taste, we asked her pediatrician to run an allergy panel. Did you know you can do that in a blood test now?

A Friday later, Brian called me at work. He always starts his calls the same, “You in a meeting?” I guess he’s learned I usually am.

“Yeah, just finished though, what’s up?” I asked thinking about the next thing I needed to do.

“We got Catherine’s allergy report back.”

“Yeah? What’s it say?”

“You got something to write with?”

Brian proceeded to read a list of NINE foods that showed up as allergens. Trouble is, one of them was milk. Trouble with that is that the formula for the ketogenic diet she’s on to keep her seizures under control is based in, you guessed it – milk!

I had a bit of a freak-out. If I look back and observe my behavior after that call, it was a bit ridiculous. I wandered from person to person at the office telling them this news. What was I seeking? Some understanding. The problem though was that try as they might – and they did – there was no real way for them to understand all the concerning implications running through my mind. I needed to talk to a friend who had a kid like Catherine.

The special needs world calls kids without special needs “typical.” Sometimes the parents of typical kids understand my laments. But sometimes, I need a mom of a kid with special needs. This was one of those times. It’s not that my colleagues didn’t get it. I think they actually did. But it was my lack of feeling understood. The lack of relation that made me not feel in my bones that they felt my fear in theirs. What’s that about? It’s certainly not fair to my typical parent friends. And, frankly, it puts a lot of pressure on my special need parent friends. I’ll have to keep thinking about that some.

The good news is that we just met with Catherine’s allergist this week, and he sees no reason to take her off her KetoCal, the formula designed to control her seizures by keeping sugar and carbs away. I actually couldn’t believe a med school degree was required for this when he said, “The way we diagnose an allergy is to have a clinical reaction to a food and a blood level response. She’s not had a reaction to milk for years, so even though her blood level indicates she might, we would not call this an allergy.” That’s so flipping obvious that it made me laugh at myself for that ridiculous day I ran around trying to find someone to understand. Had I just been still for a moment, I’m sure I would have understood in my very own typical mom and special needs mom brain.

So, we wait to see about the other 8 allergens. We’ll think of Catherine as allergic to peanut, egg and soybeans. But mostly, we’ll just wait and see.

Waiting,

Ellen