I promised last week to give fear the boot, and to share one of my family’s scary stories with you. Without further ado, here it is:
Thanksgiving week, 2012. Our whole family had been down for almost two weeks with an epic bout of whatever nasty cold virus that was going around at the time. We were all starting to finally feel better…except for our oldest daughter who was four at the time. She had been struggling with an up and down fever for weeks that just would not go away – sometimes really low and then some days spiking to nearly 103 degrees without warning. The day before Thanksgiving as I sat on the couch feeding her a popsicle, it happened. It was very subtle, and if I had been distracted with another child or even looking away for a moment I might have missed it entirely – her first seizure. Eyes rolled back, all motion stopped – even her breathing. She just sagged – lifeless and limp – over onto my lap. With a scream, I gathered her into my arms and ran upstairs to where my husband was…by the time I got there and he helped me rouse her, it was over. She opened her eyes and gasped a ragged breath.
Shaking, I laid her in her bed and watched her sleep. She was totally exhausted…as if the episode had stolen every ounce of energy she had. After a frenzied call to our pediatrician, we were in the car – her asleep in my arms (we did not even bother with the carseat) – and racing to the ER. They took her temperature…over 104 degrees and climbing. We were shellshocked as they rushed us into a treatment area and began trying to hook her up to an IV. I say trying, because they did not get it on the first go. Or the second. Or the third. At that point, she was screaming in terror and pain; as another nurse came in to help my husband hold her down so they could try a fourth (and blessedly final) time, I slipped out into the hall. I was shaking so hard I was nauseous…unable to watch what was unfolding in that room any longer.
An older nurse wandered up to me and sweetly patted my arm and said it would all be ok. While usually that kind of blanket statement would irritate more than calm me…something in her seasoned, warm gaze made me understand that she meant the words she spoke. They had seen this before. They would see this again. This was not a life threatening event (praise the Lord) and we would make it out – rattled and weepy, but we would make it.
My resolve bolstered, I said a silent prayer and crept back into the room in time to see them hang an incredibly full fluid bag from the IV stand. She was so tiny on that hospital bed. So frail. For hours my husband and I sat and watched her rest, praying and weeping as we took turns snuggling with her and getting her juice. Finally, she began perking up and her temperature receded. They discharged us, saying she had undergone a febrile seizure – something that occurs in children when their fevers rise too quickly. Almost like a built-in reset button in their systems that shuts down to keep their core from getting too hot. Self preservation. She was at the very top of the age range for those to occur, especially since she had never had one before, but we accepted the diagnosis and took her home.
Thanksgiving was somber – marked by paper plates and eating in shifts as we sat by her bed. After a few days she seemed to improve, although an ever-present low-grade fever persisted on into December. We opted for an antibiotic, hoping that it would kick whatever her body was fighting.
December 14th, 2012. Her second seizure. Where the first had been quiet and brief, this one rushed in like a roaring lion and threatened to stay indefinitely. My husband was out at an evening Christmas party for work, but my parents were fortunately with us. My daughter’s fever had spiked, so I had her in bed reading while I did laundry and waited for the Tylenol to take effect so I could safely send her to bed. As I passed by her room on one of many trips up and down the stairs, I happened to glance in just in time to see her back arch, spinning her violently toward the wall. Dropping what was in my arms, I screamed for my parents and leaped onto her bed. Her muscles were spasming so hard that I had to hold her down with almost the full force of my weight.
I recalled hearing somewhere that someone having a seizure like this should be propped on their side…I finally was able to get her there by the time my parents made it upstairs. I sent one of them to keep our youngest daughter occupied so she would not see everything unfolding and had them call my husband to come home immediately. Assuming the worst was over and that she soon would come out of it, I waited and prayed. The seconds ticked painfully by like lead weights. She started turning blue. I started panicking. I had NO IDEA what to do. None. There’s no parenting plan that covers this; no handbook or guide for what to do when the unexplainable and unexpected happens. And even if there had been – I never would have thought I needed it…until I did. I grabbed my cell phone and called 911 – almost unable to even dial those three numbers my hands were trembling so badly (much as they are right now even trying to type these words). The dispatcher ran through customary questions and said the ambulance, along with emergency response personnel, would be to the house soon. They stayed on the line with me as seconds drifted to minutes…and she kept seizing.
All told, what felt like an eternity amounted to a seizure lasting almost four minutes. Four minutes of utter terror as I watched my precious little girl go through something that I hope I never have to see again. The next hour was a blur. I remember the paramedics and emergency response team showing up within minutes. Almost nine people crowded into her little pink and green bedroom, looking so terribly out of place with their uniforms and medical gear standing next to pictures of flowers and shelves filled with stuffed animals and little-girl accessories. I remember my husband rushing in, his face as pale as I am sure mine must have been – his eyes filled with the same shock, fear, and disbelief too.
They loaded her onto a gurney ten sizes too big for her sweet little self and shut her away into the back of the waiting ambulance parked in our front yard. I jumped in with her – my husband drove behind in our car. I will never forget those brave, kind people that came that night. Volunteers that were there for us when we needed them. That are there for countless other families just like us at a moment’s notice.
At the hospital, it was the same routine as before – except with a lot more pomp and circumstance thanks to the speedy delivery treatment we received thanks to the ambulance. I noticed one arm and side were twitching…even though the seizure was over. This continued for over an hour as they once again loaded her up with IV fluids and medicine to get her body stable. They mentioned a febrile seizure again…I asked why, when this one had been so different than the first. Her temperature had risen slowly, and never made it above 102. And why the continued twitching? No answer. Just homeward bound amid more tears and trembling and frantic, silent prayers.
A trip to the pediatrician soon after yielded a mega-dose of antibiotics: 21 days of intense treatment that we hoped would kill whatever was attacking her immune system. It helped with the fevers. It gave her some added energy. And, just a few days into the treatment, it also ushered in the next in our crazy health issue saga: intense facial twitching.
I first noticed it as she sat and watched television one night after dinner. It was so pronounced on the right side of her face…I took a video and immediately emailed it to our pediatrician, asking what in the world was happening. The next day, I took more videos, as the frequency and intensity of the twitching increased exponentially. Needless to say, within days we were back in his office yet again. The plan of action? An immediate EEG followed by an MRI appointment. We asked if we could take her off the antibiotic since nothing much was happening…he said yes. To this day I am so thankful that we listened to our “gut feeling” on that.
We earlier had decided to have her tested for allergies in a grasping attempt to do SOMETHING proactive. It was around this time that we started trying the essential oils as well. Knowing that many people had used Frankincense oil, especially, to help curb seizures in children, we used it daily on our daughter to just see what happened (whether related or completely coincidence, she has not had a seizure since…something we definitely attribute to the oils in at least some regard). The allergy results came back a few days after taking her off the antibiotic. The results were staggering. Gluten, dairy, and peanut intolerances were among the top offenders, as were heightened sensitivities to pesticides and similar substances (GMOs are something we steer clear of now as well – learn more here). Another sensitivity listed in those results: sulphur. Her 21-day mega-dose antibiotic? A sulfa-based medicine. We were essentially poisoning her little body as we tried to heal it.
We removed the offending foods from our family’s daily diet. The result? An absolute “180” in terms of overall health and wellness, especially when the oils were factored in. We felt like we were on top of the world! Especially when the EEG came back normal! But life is nothing without twists and turns, and for us, twist #3 was lurking for the grand finale of our health drama. Her MRI revealed a small mass located in her pineal gland. One of the absolute hardest places to reach in the brain. Was it a tumor? Was it a benign cyst? Was it growing? Was it cancerous? Was it causing all of her symptoms? Countless second opinions and referrals, a trip to Seattle Children’s Hospital, and a second MRI later, the overall conclusion our doctors have reached is that 1. the mass is likely not the cause for her other symptoms, and 2. it does not appear to be growing, making it likely that it is a cyst that will never be an issue for her that requires treatment or removal.
Our action steps? Constant prayer and monitoring. And essential oils. And good foods. And careful attention to her little self whenever she does get sick.
For now, seeing her healthy and vibrant is enough. More answers would definitely be nice…but at least we have the HOW to help her, even if the WHY it is all happening isn’t able to be fully answered.
This is our story. Well, one of our family’s stories, anyway. Like all families, we are a crazy tapestry of threads and stories and situations and experiences that have shaped us and will continue to shape us as the years pass by. It is a wild ride, but one that we are so grateful to be on.
I know your families all have stories too, and we would be honored to have you share them with me! Feel free to leave a comment below, however long or short as you like. Thank you for taking the time to read all of this – I hope you walk away encouraged and filled with peace and hope, and with encouragement that you can face life head on and not have fears or past experiences define you. We are so much more than just the sum of our days – we get a chance every day to put past things where they belong: behind us. This way we get to move ahead freely into the life God has called us to live.