**I’ll be honest, I hesitated to share this with anyone for so many reasons but in the end, I decided that giving back was most important.
If reading this gives someone an ounce of the support and comfort that reading other people’s stories and battles gave us while we were in 'freak out - gather all info from the internet - talk to as many people with your situation as you can' mode - then sharing some personal shit has to be worth it.
That being said, the one thing I ask is that you don’t download the videos. As a parent, I'm sure you understand that I'm protective of my daughter and the only reason I’m posting them here is in case someone else's kid has something similar, they don't feel alone. I can't tell you how many videos my guy and I watched of other kids going through what our kid went through. We looked for the similarities and the differences just hoping for an answer.
Watching other people's videos and reading their stories helped us to know we weren't alone and other parents had been through what we were going through.
After my last post on FB about our daughter we made it home and aside from a lingering fever, she seemed to be doing fine. She had a few more starts of febrile seizures but each time we were able to cool her off and bring her back before she went into full seizure mode.
But about 7 days after we were home, I noticed something a little off. Usually a super engaged kiddo, twice I caught her staring off to the side. It only lasted a few seconds but it was really unlike her.
I thought maybe she wasn’t feeling well, having a bowel movement, idk. I just noticed it and mentioned it to B.
The next day it happened 3x.
The following day 5.
Each day, more and more of these moments of staring off to the side and zoning out happened.
They seemed to be happening out of nowhere - no link to eating, playing, sleeping, etc - she would stop what she was doing and her entire head would turn to the side. she’d stay there for a few minutes staring in that direction before slowly bringing her gaze and head around and letting out a sigh and a big mouth of drool.
Sometimes I’d be able to catch her focus and keep her attention as she turned her head back around and other times I couldn’t.
We called our pediatrician and made an appt with a neurologist, but in the meantime, it kept getting worse.
I had mapped out a chart to see if there was any connection between the times of her feedings and these zone outs but we couldn’t find one.
What we did find was that they happened almost like clockwork. At first every 3-4 hrs.
Then 2.5 hrs.
The day it got to every 60 minutes we headed to the ER.
That was also the day that we noticed the trigger. Right before it would happen, she would pause what she was going and her left eye would blink.
We also noticed something else going on. Not only could she tell when they were about to happen, so could we. It was like something in the air changed - like a dog who can sense an earthquake - we could just tell. (Which helped us get ready to record these moments and catch the trigger on camera.) We later found out that this was called an aura.
In the Hospital
At the hospital, while being admitted, the nurses witnessed her having one of these episodes and gave her medicine to stop it.
That was the start of what became a 7 day stay at the hospital to figure out what was going on with our daughter.
The rest of the day and part of the next day she was great. We'd started doing testing and bloodwork. About midway throughout the day she had another episode.
Then we started noticing different things that we hadn't seen happening at home.
Stuff like, she'd be eating, fall asleep with the bottle in her mouth and then as I would take the bottle out, her eyes would pop open and she’d go into a zone out. The direction she was looking also completely changed. Up until this point, she always looked to the right when these things were going on. Since in the hospital, now it was always to the left.
Needless to say, we rarely slept from that point on. Worried that she might have another episode in the middle of the night and could choke on her own spit.
What we learned from the neurology team was that these were indeed seizures (different from the febrile / fever seizure) and that when kids have one type, they can often be followed by others.
They also said that falling asleep or waking up is a common trigger for kids dealing with what she was dealing with.
Being at the hospital was it’s own kind of hell. We rarely left the room because honestly, it was just too painful. We were at a pediatric hospital and seeing so many littles attached to tubes or iv’s was just too much.
That being said our kid didn’t seem to mind. She made friends with all the nurses and enjoyed anyone giving her attention.
After 7 days, 3 rounds of bloodwork, an extended EEG, an MRI and a Spinal - they didn’t really have any answers. They put her on a few meds, discharged us and we continue to do testing to figure out why this happened and to see if it's a short-term or long-term issue.
Our hope is that as she continues to grow, she grows out of this.
To continue my “learn from our lesson” a few things that we learned the hard way:
+ Insurance -
BEFORE you sign on the dotted line for insurance coverage make sure that the insurance plan you pick obviously not only has your kid's ped in network but your hospital of choice (and specialists) too.
We had always done this with our own health insurance, but we had never in our wildest dreams anticipated the amt of care that she would need or the different types of specialists that she would need to see.
+ Use Your Voice -
I think a lot of times we get stuck in this "we don't know what we don't know" scenario so naturally we look at the experts to guide us. Sounds about right. But we were often given answers that frustrated us. That were more based on "protocol" than specific needs for our daughter.
Once the shock of what was happening started to wear off, we started questioning and asking for explanations on everything.
Ha! I'm sure we were super annoying but neither of us cared. Our constant questioning ultimately resulted in better awareness and care for what our daughter was going through.
+ Don't Believe Everything You Read (especially on google!)
This is a no-brainer but hey, when you're at the end of your rope just searching for any type of answer, googling can become addictive. I can't tell you how many times I was 100% sure that I'd found the name, the cure, the answer to what was going on with our kiddo. Or the times I just had to shut down the internet because nothing I read made me feel like we were going to get a positive outcome on this path we were on.
Now I give myself a time limit on google when it comes to searching for answers because while it can drive you crazy, these situations are also different because every case is different. To this day, no doctor can tell us exactly what's going on or why it happened.
+ Do What's Right For You And Ignore the Noise
More on this in another post but here's the thing. Everyone from your parents to your friends to the randoms you meet on the street will 100% be positive that they have the answers and you should do <insert their opinion>.
Listen, take it in and then take it for what it is. Advice. Just well-meaning advice. Nobody wants you to be in the situation that you're in and you gotta remember that people are just trying to help.
I wish I had more answers for everyone (and for ourselves!) but at this point it's sort of a waiting game.
The silver lining here is that our kiddo's personality hasn't changed. I know for a lot of kids, going through what she went through can be traumatic and totally change the way they look at strangers (is everyone a doctor who wants to poke me?!)
Luckily, she's stayed super upbeat and still smiles at everyone she meets.
We'll keep you posted on her progress here - thank you so much for everyone's support!!
**Follow up - after writing this we ended up back at the hospital for a 3rd time this year. This time for failure to thrive (ie. not gaining weight). We're on a slow and steady incline (I hope!) and I so appreciate the support, comments and help you guys have all given us. Couldn't do without ya! <3