A few weeks ago I wrote about some concerns we've been having with little Laney Bug and I want to take this time to update you. And also to document everything we're going through so as not to forget any of it.
First things first: Laney is going to be just fine. Want to get that out of the way before anyone's heart skips a beat.
The week before Christmas the girls were invited to a fancy tea party at Nanny Natalie's house with Miss Kay (Natalie’s mom). Everyone had a great time. Tea was had. Cookies were frosted. Pictures were taken. The girls came home with stories. I was sent pictures from Natalie. As far as I was concerned, everything was right with the world. Until.
Miss Kay (aka Granny Panties) called that same evening to tell me how much they loved having the girls. How special they are. And probably other things I forgot. Miss Kay had never called me, but after such an eventful morning, I didn't think anything of it. Until.
Kay went on to say, "I noticed some behavior today that is a little concerning and I'd be remiss to not tell you. Mother to mother." I thought she'd say something about how Laney bit Izzy or one of the girls mouthed off. Nope. Not even close. Kay said that as they were sitting down to eat lunch Laney zoned out. They took a picture and Laney didn't look. Didn't move. Kay and Natalie called her name. Nothing. They made noises, clapped, to no avail. Bottom line, Bug was unresponsive.
I immediately thought, "Oh, Lane is just a stubborn little girl and often times ignores us!" But couldn't utter these words, as Kay kept going. She was very thorough in her description and talked to me so slowly I felt the world was going to stop. Kay knew this was going to be hard to hear and she spoke to me so softly. So kindly. I asked her what this meant. The answer was more than I could wrap my brain around.
Kay said that what she thought she witnessed was a petit mal seizure. A WHAT?!?! (Back story on Miss Kay: she sold pharmaceuticals for over 20 years. At one point in her career she sold a drug for seizures to pediatric neurologists.) She explained that a petit mal seizure is when a child basically zones out for anywhere from 10-45 seconds, unresponsive to any stimulus (which is the opposite of a grand mal seizure where convulsions are present). Kay said she wasn't diagnosing but she had and idea of what may be wrong. She once sold a drug for just this behavior (read: when you sell pharma, you are trained extensively on the drug you are selling, as you have to be able to talk-the-talk with the physicians). Bottom line: Kay knew what she was talking about. And the name for it is absence epilepsy.
All I heard was epilepsy and I lost it.
I took notes. Copious notes. I didn't want to miss a thing. I could barely read what I was writing, as the tears were just flowing. They wouldn't stop. I had no idea what epilepsy meant or entailed, but I feared the worst.
Kay said that most times this type of epilepsy/seizure goes undiagnosed until elementary school, when the teacher calls home to tell the parent their child is a day dreamer. Not focused. Also that children grow out of this form of epilepsy by their teens and in the meantime there are great drugs to help stop the seizures. What Kay was doing was trying to settle me. Reassure me. Yet I still cried.
I cried because I was uneducated on epilepsy. But more, I cried because I didn't notice it first. I mean, I did. But I ignored it. Thinking she was being a terrible two and ignoring us. Tuning us out. Both Mike and I had witnessed her “zoning out” but simply thought she was being her stubborn little self. Nope. Not the case. But how were we supposed to know it was anything but ignoring us since we didn’t know what we didn’t know?
My guilt for being a full time working-outside-of-the-house-mom hit me. Hard. I’ve never really had any of that guilt, as I simply love my job and know that I need the structure, achievement, acknowledgement, and personal development I gain with working full time. But during this phone call? I was floored. Why do I work 40 hours a week, only spending 2-3 hours with my girls each evening, and miss something so big? I should have been the one to call this out.
Kay understood my tears and went on to tell me what amazing parents we are, what a great role model I am to the girls, how lucky our girls are to have us as parents. She truly is the sweetest woman and so caring and compassionate.
As I collected myself at the end of the call, I wrote down Kay’s suggestion to get Laney checked out at our Pediatrician followed by a referral to the best pediatric neurologist in town.
Hung up the phone and Mike and I just stared at each other. Both of us in denial that what Laney was enduring were really seizures. But both of us realizing the occurrences are very strange and worth getting checked out. We were both a little (or a lot) stunned.
I immediately texted Jaime. Then her husband. To no avail. What’s a girl to do without her bestie to talk her down from a ledge? Somehow I fell asleep and woke up the next morning to a text that Jaime was awake. I called her at 6am, retold the story, cried my eyes out, then listened as she talked me down from the ledge. Jaim reviewed the pros, the cons, personal stories she knew about epilepsy and then she reminded me that she, too, had a horrible scare when Jacob was born. So she got it. She knew what I was going through. Hearing that from Jaim made all right in my world.
I scheduled a pediatrician appointment for the next day. The doctor checked Laney out (as best as he could, given he’s a general practitioner not a specialist) and listened to us recounting the stories of all the times we’d seen her “zone out.” He referred us to the same ped neuro that Kay did and was able to get us an appointment on January 7th. In the meantime, our ped told us to pay special attention over the next two weeks of vacation to any of these episodes. If possible, to record them for the neuro. Roger that. We had a plan. And almost two weeks of family time together. Really was perfect timing (if there is such a thing when it comes to something wrong with your child).
Now that we were in tune with what may be happening, I was ultra aware of Laney’s behavior. And the sad part is that we witnessed the “zone outs” multiple times over the course of the break. Our parents saw them. My sister saw them. It was now clear that this wasn’t just zoning out. We saw Laney have these episodes at the dinner table, while baking cookies, mid-dance party, you name it. My mom even poked her cheek (gently) and spread some frosting on her lips while she stared off. Not even a blink of an eye from Bug. Each time one of these episodes happened I just watched her, called her name and teared up. Looking at whoever else was in the room witnessing the same thing, saying with my eyes, “See? That was it. Isn’t that sad?” I was sad because now others were witnessing it. No turning back now. Something was amiss.
And not one time did I record any of them via video. Because all I could do was look at my baby and feel so helpless.
Last week I was finally able to tell my neighbor, Jill, about what was going on with Laney and her possible seizures. Jill’s immediate response, “I’ve seen them!” Heart. Breaking. Now even more people noticed her behavior pre-Kay phone call.
Just yesterday Jaime told me that the day I called her at 6am, after she dropped her boys off at school, she watched Laney in her classroom for a while. And even Jaime saw Laney zone out. In the middle of play time. Again, another person validating what we are all concerned about.
In fact, Nanny Natalie sent a picture from the day of the tea party that was taken at the beginning of the episode that Kay called about. Natalie and Izzy are looking at the camera and poor Buggy is staring in the opposite direction, head down. In true form to all the episodes we have been seeing on our own. Was tough to look at.
Finally January 7th arrived and we met our amazing ped neuro. He came not only highly recommended by my pediatrician and Kay (she called on him during her pharma days) but also from our neighbor. Jill has siblings that are quads and one of them has an extreme case of cerebral palsy. Dr. P is her sister’s neuro and Jill’s family adores him. Anyway, we described the episodes in full detail: stares into space, unresponsive to her name or loud noises, sometimes blinks but never moves, comes out of them as if nothing has happened and they last about 10-20 seconds. A few in-office tests were performed by Dr. P then he suggested we get an EEG (brain scan) to verify if it truly is epilepsy.
But there’s a catch. Fifty percent of patients with epilepsy have normal EEGs. What Dr. P suggested was for us to do a pinch test on Laney. Next time we see her in one of these episodes we gently pinch her. If she doesn’t react, then it is a seizure (because he said a lot of children are very good at tuning out their parents!). He wants us to do something to her that would cause a reaction. I mentioned the frosting my mom put on Laney’s lips without even a blink of her eyes. He nodded and agreed that was a big one; most kids will react to sugar.
So we have a game plan: this Friday Laney is going to have an EEG during her nap time. Dr. P said the brain is most active while sleeping and gives the best results for the scan. He also mentioned that most seizures happen while the patient is tired. This makes sense, as we have seen a lot of them right before naps and right before bedtime.
We’ll see what comes next. If Laney truly is having seizures there are several very safe & effective medications that will reduce/eliminate the seizures. Breaks my heart that a two year old may have to be on serious medication. But on the flip side of that coin, there’s a treatment. That works. And this is something children grow out of. However, if left untreated, the seizures can become more frequent and possibly worse.
My perspective on everything we’re going through is becoming more in check as the days go by. At first I was scared. Then sad. Then thankful. Thankful for Kay’s training in this specific field to be able to recognize it. Thankful for close friends and family that love our girls enough to tell us that they, too, have witnessed this behavior in Laney. Thankful for the phone calls, emails and texts supporting us. And most important, thankful this may only be epilepsy. It’s not life threatening. It’s treatable. It doesn’t last forever. It causes no pain.
Laney may be zoning out. But she is still
here. Our Laney Bug is full of life and spunk and cuddles.
