Heroes come in all shapes and sizes. They may be famous or have a personal connection. Maybe your heroes are the ones who run into disaster instead of away from it. Perhaps your hero is a literary figure, a community leader or even a hero of the super kind.
Not too long ago I got the opportunity to see my personal hero in action and I couldn’t have been more in awe of his calm, cool demeanor under a stressful situation. He spoke the words I had trouble forming and he didn’t freak out when questioned by the adults in charge.
Ladies and gentlemen, I’d like to introduce you to this hero, my 9-year son, Antonio.
An unlikely protaganist
Antonio has asthma, and during a particularly bad night of wheezing and coughing, I needed to take him to the ER. This wasn’t our first rodeo at the ER so I was fully aware that we were going to be there for several hours while the doctors worked to get his asthma under control. I was drained from being up with him all night, but that paled in comparison to how distressed he was as he gasped for a deep breath.
First came the nebulizer treatment, which helped him tremendously. But he wasn’t out of the woods yet.
By now it was approaching 7 a.m. and we’d both been up for most of the night, desperate for a little sleep. While Antonio caught some zzz’s, I tried my best to rest in one of those uncomfortable upright plastic hospital chairs. Needless to say it was a fruitless effort. But I was here for him and my comfort was going to have to take a back seat.
A couple hours dragged on, and the doctor felt it was necessary for him to get an X-ray to rule out pneumonia as his breathing was still a bit labored. The doctor led him into the X-ray room and I sat and waited outside the door. Then time stopped.
A bad episode
I started to feel the symptoms of my functional neurological disorder (FND). My brain became foggy, sounds were muffled and far away, and I immediately grew very lethargic. The exhaustion was catching up with me, and my legs started to shake.
The tingling heat of my nerves was beginning to burn from my core out to my limbs. I tried to breathe through it and remain calm, but it wasn’t working. I was so furious that my body decided that now was a good time to start malfunctioning.
The X-ray didn’t take longer than a couple minutes, but as we started walking back to his room, my legs buckled from under me. My muscles were stiffened and contracted I couldn’t believe it, I was having a non-epileptic seizure right there in the middle of the pediatric ER.
The nurse accompanying us had me sit down and asked me what was happening, but by then, my speech was completely garbled. She presumed I was diabetic and having an insulin attack and ran off to grab juice and crackers.
Another nurse stopped to help, but she too couldn’t understand what I was saying. I pointed to my medical alert bracelet, which states I have FND and non-epileptic seizures. However, she glazed over the “non” part and immediately jumped to the conclusion that I was epileptic.
Quick moves, wrong action
She called over to someone from the urgent care team who insisted I be sent to the adult ER. He started coordinating help on his phone while ignoring my pleas not be sent there. You see, there is no medicine that stops these kinds of functional seizures. They are drastically different than epileptic seizures and do not show up on EEG’s because they don’t cause electrical changes in the brain.
If I had been taken to the ER, I would’ve been pumped up with meds that would’ve made me sick and loopy, and I could not let that happen while my son was still in the pediatric unit.
In the midst of this chaos I tried to make eye contact with Antonio, but these seizures make it difficult to keep my eyes open. I could hear the nurses desperately trying to make sense of a situation they didn’t understand, while the guy from the urgent care team didn’t let up on his mission to get me to the ER. After what felt like an eternity (but was probably five minutes), one of the nurses asked Antonio what was wrong with me and I heard his voice, as calmly as ever, explain that I have FND.
Cool as a … kid
He didn’t understand why they were so confused by his explanation, but I knew immediately it was because they’d never heard of it before. It’s rare and weird, but a real thing.
The nurse asked him what I usually do in this situation, and he said I took drops of oil under my tongue and that the bottle was back in his room. I heard her footsteps as she ran to get my bag and was relieved to know that those drops of CBD/THC oil were on the way. After suffering with this seizure disorder for six years, I’ve discovered through trial and error that this oil is the only thing that stops the seizures.
The trick for me is to ingest the oil within seconds of the seizure starting, otherwise it will last up to 10 or more minutes. That oil is like gold to me and I would travel the ends of the earth for it.
Antonio grabbed the bottle and gave it to one of the nurses to open. By this point, I was able to shake my head more firmly to the urgent care guy that I absolutely did not want to go to the ER. He seemed annoyed as he called into his walkie-talkie that I was refusing care.
Meanwhile the nurse read the bottle and relayed to Antonio that she wasn’t allowed to administer the CBD drops and she gave the bottle back to Antonio.
Thankfully Antonio knew exactly what to do, and in that instant, he became my hero. He opened the bottle and gave me the drops, like a mama bird feeding her young. He then gently held my hand and told me it was going to be OK.
It took another several minutes before the seizure loosened its grip on my muscles and I was able to be wheel-chaired back to Antonio’s room. My hero jumped back in his bed and continued with another round of nebulizer treatments, and once he was ready to be discharged, he and I were both feeling much better.
Once home, he and I talked about our adventure. He still didn’t understand why the hospital had never heard of FND or non-epileptic seizures. He wasn’t scared of the event but rather confused why the staff wasn’t allowed to give me my medicine.
I told him that although it’s unfortunate they didn’t know how to help. My hope is that as others learn about FND and what it is, my children and I will have less educating to do. In the meantime, I was super proud of how he reacted and told him how lucky I was to be the mom of such an amazing kid.