A threat we never saw coming

In the late 1600s, the Swedes knew that the most likely way they would lose their authority over the nation of Estonia (where Brian and I have been privileged to live for over 9 years) would be a land attack on the Tallinn castle fortress. So they spent a lot of time and money building an impenetrable defense system using the latest defenses — bastions. No one could get through these thick walls that held armies and cannons alike.

A few decades later, however, and the Swedes had lost Tallinn as well as their hold over all of Livonia. But the threat didn’t come by land, as they had expected. Instead, the attack came through the Livonian nobility, who promptly gave the land up to Russia during the Great Northern War of 1710.

The Swedes planned their defenses, but were blindsided by a threat they didn’t see coming.

When the Russians took over Estonia, they knew that the greatest threat on the tiny nation would come via sea. So in 1830 they built a huge sea fortress on the shores of Tallinn. No one would be able to get past this massive building meant to decimate a fleet of ships trying to sneak in to the shores of Tallinn via the Baltic Sea.

However, after years of waiting expectantly to defend the shores of Tallinn using their fortress, the threat never came by water. Instead, Russia lost its hold on Estonia shortly after WWI when an uprising broke out within its own borders — countrymen split into two sides and turned against one another. With Russia weakened, Estonia quickly took advantage of the situation and declared itself a sovereign nation.

The Russians planned their defenses, but were blindsided by a threat they didn’t see coming.

The pattern repeats

Over and over again this has happened in history. We expect a threat, we build up a defense, and then danger comes from elsewhere.

It’s happened so often that we should expect it by now.

WWI was fought and lost in the trenches. Afterwards, France invested heavily into building the maginot line so they wouldn’t be defeated the same way again. Yet WWII saw the airplane become one of the most influential weapons of war. France’s defenses were useless and they fell again.

Again and again, as humans we look for threats and prepare well. But then we’re blindsided by a completely different danger we weren’t expecting. Nuclear weapons. Guerilla warfare in Vietnam. Cyber attacks. 9/11. ISIS. Troll factories. The housing crisis. Now COVID-19.

Today, we often point to “the other party” as the biggest threat we need to defend against, but the reality is it’s more likely our hatred of “the others” that’s the bigger danger to our world.

The more we hate and point fingers, the more it grows.

I’m just as vulnerable

I wish I could say I am completely immune to looking for — and preparing for — danger in all the wrong places. That I’m somehow more mature and more wise and can magically predict the future.

But, regardless how much I’ve tried to neutralize known threats when it comes to Eloise’s health, it seems I have fallen into the same trap as mankind.

Eloise’s “big threat”

The biggest threat we’ve had our eyes on for Eloise is seizures.

I know of only one or two kids of the 2q24.3 deletion family that have never had seizures at all. Which is why we’ve assumed it isn’t IF but WHEN Eloise gets them.

From talking to parents, I’ve gathered there are 3 main catalysts for seizures

1. Fever (before the age of 1 — often from vaccines)
2. Fever/pain (generally after age 1 — often from illness)
3. Puberty

And from talking to parents, it seemed over and over again that the kids that were most severely affected seemed to be those that had seizures before the age of 1. And their seizures often started after they got their 3 month vaccines. After those seizures began, it was often years until families and the medical system were able to get them under control. And, by then, there had already been severe brain damage in those sweet little children.

I don’t have to tell you how terrifying that prospect is.

My easy solution

I had a simple fix to this. While I couldn’t control whether Eloise got an illness or not (although viruses are at an all-time low thanks to COVID restrictions, which I am soooo thankful for!), I could control her vaccines.

No vaccines for Eloise until much later in life.

Just like the Swedes who knew how to protect their fortress by land. Just like the Russians who knew how to protect their city by sea. Just like the French and nation leaders and you and I who knew we were going to be smarter than the people that fell before us, I thought I had averted that danger by skipping her vaccines.

But the threat came from elsewhere

What I wasn’t expecting is teething.

I wasn’t expecting teething to happen before the age of 1.

I wasn’t expecting teething to affect her eating.

I wasn’t expecting teething to give her a low-grade fever that came and went.

And I definitely wasn’t expecting teething to be the catalyst for her first seizure.

But it happened.

Eloise had her first seizure on Sunday night.

Sunday night, when I thought we were all safe. Safe past the 3-4 month mark of the start of severe seizures that cause brain damage. Safe past several low-grade fevers she’d had in previous months. Safe past the peak day where she would have had a bad reaction from my second COVID jab.

How it happened

Yet there we were, on the couch, me feeding her. Eloise was squirming from the pain of her two teeth slowly bursting through her lower gums when, suddenly, out of nowhere, her body tensed up. She threw herself forward with her arms and legs spread out. Her eyes suddenly focused on nothing. And her little body shook. For all of 2 seconds.

Immediately afterwards, her body quickly relaxed and she returned right back to normal — as if nothing had happened.

But for me, something huge had just happened.

I called Brian in the room in a panic as I sat there in shock, unable to move as my heart sank. A few months back, we’d watched some training videos on the different types of seizures and what to do in case one happened. From that, we knew that if a seizure lasted for longer than a few minutes, it was time to call the ambulance. This one was only a few seconds, so it didn’t qualify.

But it still scared me. Enough to start her on the preventative medicine plan I’d had recommended to me by parents and doctors alike. Fever-reducing medication around the clock.

So I dug through our box of medicines and grabbed the baby paracetamol suppositories that Julia had bought for us from a pharmacy months ago. Just in case.

We’ve had Eloise on it ever since Sunday night.

Now what?

By Monday I was trying convince myself that it was just a tiny seizure, I was overreacting and she’d be fine. By Tuesday I was convinced I needed to figure out how to see the neurologist we’ve been wanting to see for months — but sooner. After a few calls to our family doctor and to the hospital, our options were go to the emergency room and see if they would do anything, or wait 3 months to see the neurologist we really wanted to get in to.

Instead, we decided to pay for a consultation with a pediatric neurologist yesterday.

Fascinatingly, the doctor then promptly consulted with the same neurologist we’d wanted to see for months. Their only advice is if we suspect she has another seizure, to go straight to the emergency room.

The plan

Which means the plan is to wait. And pray she doesn’t have any more seizures.

Part of me says this sounds like a reasonable course of action.

From talking to other parents, their kids’ first seizures lasted for several minutes and their kiddos were exhausted afterwards. And they often had several of them in an hour, so going to the hospital made sense. When you compare Eloise’s experience to theirs, Eloise’s seems quite mild.

But another part of me is panicking.

What if those moments of Eloise staring off into space have actually been absence seizures the whole time? What if Eloise’s moro reflex moments when we lay her down have actually been infantile spasms? That means the brain damage is already happening and we need to get an EEG as soon as possible to confirm unusual brain activity so we can get her on preventative medications and stop anything else from happening.

What will we do?

I honestly don’t know what we’ll do. Whether we’ll passively wait or try to get more aggressive.

All I know is that I was looking for the threat to come from vaccines. I did everything in my power to protect her, but still it wasn’t enough. The danger came from elsewhere.

And I have a funny feeling that, even now, no matter what we do, danger will still come in an unexpected way.

At the very least, I just hope her teeth come in sooner rather than later. Because this little munchkin has been in a lot of pain today despite around-the-clock paracetamol.

Hugs from these shaken parents,

Mallory, Brian, and unaware little Eloise

Photo sources: Tallinn bastion & Patarei prison