Today’s Silence Comes With an Unfair Price

Something strange and wonderful is happening in my house right now. I’m sitting here sipping my coffee while trying to organize all of the thoughts in my head. I hear the whisper of the fan, I hear the rhythmic pattern of the washer and I can even hear the rumbling of my stomach telling me to go eat breakfast. What is missing this morning is the usual chaotic noise that is generally found in my home. There are no kids laughing or crying, the dogs aren’t barking because they are being attacked by Lola or Sebastian (OK – mostly Lola) and the TV isn’t displaying its normal morning show — Curious George. Instead I’m sitting here alone and in silence. I should say that I’m missing all of the above, but the truth is — I’m enjoying the quietness. While I’ve grown to appreciate the sounds that comes out of my house (I’m sure my neighbors think otherwise), I’m going to be real honest here and say that it’s OK to enjoy a little alone time.

But unfortunately, today wasn’t planned this way.

I was supposed to be in Louisville, Kentucky for a staff meeting, but my mother’s instinct told me not to go. Because the truth is, Lola has begun to have seizures.

There I said it.

I’m not sure why I didn’t want to share this news. Most likely because it’s real, it’s scary and it’s something very personal. But I know the outpour of love and support will lift our spirits and I know sharing our story may help another family know that they are not alone.

Back in May, Lola had a breakthrough seizure. This means it was a seizure we could actually see. Remember she was having subclinical seizures at night, but they weren’t noticeable to the human eye — only an EEG could pick them up. The breakthrough seizure happened one early evening after a field trip to the zoo with her school. I was nursing Sebastian and Rob sent me a text (savvy communicating for parents trying to get separate kids to sleep) that Lola had had a seizure. Panic instantly set in. We hadn’t actually witnessed a seizure in over three years so it was scary. Early on in Lola’s life, we were told it was likely Lola would have epilepsy as a child and maybe even as an adult because of the infantile spasms she experienced as a baby. So we always expected the best and prepared for the worst. She had been lucky for a long time. Three years without clinical seizures was a gift. But that week, Lola just happened to have an appointment with her neurologist, Dr. Zimmer. Interestingly enough, Dr. Zimmer wasn’t too concerned with this one breakthrough seizure. In fact, she was so impressed with Lola’s overall development that she simply upped the anti-seizure medication, Trileptal and said see you in six months.

We felt relieved.

If Dr. Zimmer wasn’t worried than why should we be? And we went on with life.

But last week, I saw an image of Rob massaging Lola’s legs on the video baby monitor. I instantly knew what was happening — she was seizing. I hadn’t actually witnessed Lola having a seizure, so I quickly went to be by her. To be honest, most people probably wouldn’t even know it was a seizure. She doesn’t shake uncontrollably and her eyes aren’t rolling back in her head. We’re grateful they haven’t emerged so violently. Instead she just lays quietly, her eyes don’t focus, her legs tighten and she’s just not present. After a few minutes, she starts to come back. Her smile returns, her crazy legs start kicking again and we see Lola emerge. Even though her seizures are silent and they don’t seem to hurt her, it still breaks your heart to watch. As another mom whose son has epilepsy said, “You just feel helpless.” And she’s right. There’s nothing you can do and for a parent — that’s the worst feeling in the world.

Lola had another seizure on our way back from the dentist office on Monday. I’m choosing to post the video I recorded for two reasons. The first is that many of you who read this blog are around Lola so if by some chance you see something that looks like this, you will know that she’s having a seizure. Secondly, this blog is a platform to create awareness. By showing this video, I hope you’ll see that seizures aren’t always how they are portrayed on TV or in the movies. They come in various forms as you’ll see.

After the second seizure in two days, I immediately called Dr. Zimmer. I sent over the video and explained my concerns. I’m thankful Lola has a neurologist who is accessible and who takes our concerns seriously. We were given a couple of different options. We could take her to Riley Children’s Hospital right away for a two day video EEG and see if anything shows up. Or we could slowly introduce Keppra and see how she responds. We decided to try the Keppra.

Keppra is a commonly prescribed anticonvulsant that Dr. Zimmer has suggested to use in the past (when Lola was having the subclinical seizures). The side effects can range from extreme irritability to increased wakefulness. About 30-40% of patients experience the irritability which is a staggering number. And it’s not just fussiness. We were told Lola would be like a different child. While I want Lola to be seizure free, I don’t want to create some FrankenLola. So we’ll see how she does over the next three weeks on the Keppra. If it seems to work and FrankenLola doesn’t emerge then we’ll slowly wean her off the Trileptal. She’s been on Trileptal for over three years and while it’s said to have minor side effects (drowsiness being the most common), it would be interesting to see how Lola is without it. She will remain on the B6 as well. Research has shown B6 in conjunction with Keppra can help even out a child’s irritable temperament.

The reason we chose not to immediately go to Riley for the two day EEG is because it’s a crapshoot and ultimately it’s unfair to Lola. If she was having numerous seizures every single day then I wouldn’t be sitting here posting about this because we’d already be at the hospital. But the truth is, we don’t know if we’d catch the seizures on the EEG. Dr. Zimmer didn’t know either. And if we were already going to be treating the problem with a solution, why put Lola through that? The last 24 video EEG was horrible for her. She was irritated, her scalp itched, she had wires pulling at her hair and really — she was pissed. Imagine that for 48 hours. 48 hours of misery for a little girl who doesn’t understand what the heck is going on. Last time she kept looking at me to fix her discontent and sadly, there was nothing I could do but keep her entertained. So while I know there will be an EEG in Lola’s future, we’re going to try to treat Lola and not her EEG.

This would have never happened three years ago. Lola probably would have been in the emergency room after a seizure because of my crazy, inherent need to gain control. But a few years in this special needs parenting world has made me realize the best thing to do for Lola, for my husband and for my own sanity is to not freak out. And that is precisely why I am going to try and enjoy my unadulterated day by myself. Three years ago, Lola would be in my view at all times day or night in the slight chance she would have a seizure. But that’s not fair to her. It was planned that she and Sebastian would go to their awesome sitter’s house and that’s where they are. She is just two houses away so if something happens, I’m right here. Lola loves being around the other children and so I’m going to just let her be a kid. She may always be a kid with epilepsy, but it’s important that she is treated as just a kid too.

8-7-14-9

We will certainly post updates on Lola and how she responds to the Keppra. For now we just ask that you keep Lola in your thoughts and maybe say a little prayer that the mean ole’ seizures will stay away. Oh and let’s hope FrankenLola doesn’t appear too.

But other than this bump in the road, summer has treated us good. We’ve had family visit, Lola enjoyed her time at camp, she starts school in one week, Sebastian is a happy, healthy little devil baby and tomorrow Rob and I celebrate our 7th year together as a couple. Technically it is seven years from our first date, but we knew we were a couple from that moment on.

Grandpa Steve visited from Costa Rica

Grandpa Steve visited from Costa Rica

8-7-14-3

So did Grandpa Pop and Grandma Rene'

So did Grandpa Pop and Grandma Rene’

8-7-14-5

I celebrated my 33rd birthday

I celebrated my 33rd birthday

Lola desperately wishes school would start

Lola desperately wishes school would start

Sebastian is growing at lightning speed

Sebastian is growing at lightning speed

And sometimes our kids really do like each other

And sometimes our kids really do like each other