Beth one month before her first seizure.
This is part of a month-long series that my teen daughter and I are writing about her life and learning to live with epilepsy. To start at the beginning, click here.
You can read the first part of Beth’s diagnosis here.
One of the reasons why I called this series the story of a “courageous life” is because epilepsy often involves traumatic and emotionally difficult events. Especially if you have tonic-clonic seizures like Beth does. Our first experience was very difficult and I almost didn’t write about all of it. But it’s a huge part of what makes Beth as brave as she is. She goes through horribly difficult situations like this and comes out smiling and happy and continues to move forward with her life. Even at five.
When Beth had a tonic-clonic seizure at age five, I was stunned. After watching her for a few minutes and calling the doctor and my husband, she was still confused and disoriented so I called 911 and she and I went to the hospital.
Once there, the ER docs pretty quickly surmised that she was in a classic postictal state – the period of time it takes the brain to recover after a seizure. Some people recover very quickly but the postictal state usually lasts for a couple of hours after a tonic-clonic seizure. For Beth, we now know that it’s pretty normal for her to be confused and drowsy for a couple of hours. Her fatigue can be so intense that she has to stay home from school and just rest and sleep for a couple of days afterwards.
But at that time, we didn’t know any of this and were reeling from what the doctors were telling us they needed to test for. They gave us two options – spend the night and do a CT scan, MRI, and EEG the next day – or go home and make appointments for those tests in the next week or two. When they mentioned that they had to rule out a brain tumor, there was simply no other option for me. We were staying and doing the tests immediately.
I don’t remember much about the EEG and the CT scan, probably because it was so scary at the time and partly because she’s had so many tests since that they all run together. But the MRI stands out in my mind because of a massive miscommunication between doctors. I wish I could say that this was the only time we’ve had that problem. But this was a doozy and terribly traumatic for both of us.
They tried to give Beth an MRI that night. They gave her a button to press if she got scared and she pressed it almost immediately upon entering the tube so we rescheduled it for the next day. The doctor explained that she would need to be sedated since it was so scary for her.
He ordered IV sedation and the nurses came in the next morning to put an IV in Beth’s arm which didn’t go well at all. The first IV blew out and was very painful and she was very upset after that – crying and fussing constantly. I was grateful when they came to take us down to the MRI because I wanted her sedated as quickly as possible. Silly me thought that the IV was going to be the most traumatic part of the whole ordeal.
Unfortunately, the anesthesiologist hadn’t read the ER doctor’s orders and had prepared a mask induction form of anesthesia for her. Without telling us anything, he simply put a mask over her mouth and nose as soon as she was wheeled in the room. She started to fight him, tried to sit up, and then everyone in the room just flipped the heck out. About five people went running to her to hold her down while he forced the mask on harder and two other people pushed me out of the room. And the whole time she’s screaming for me.
I don’t ever remember being so upset about the way a child was treated at a hospital. I was hysterical and yelling and trying to get back in the room because I could hear her screaming for me. She was fighting them so hard that they couldn’t keep the mask on and she was gulping oxygen, not the anesthesia. After what seemed like hours, she stopped screaming and I just sat on the floor in shock. Once I had calmed down and figured out what had just happened, I spent much of the next thirty minutes telling anyone who would listen how wrong that had been and how terrible it was to treat a child that way.
That afternoon, another doctor came to her room and apologized but we never heard from the anesthesiologist. Were that to happen today, I would have handled it very differently and demanded to speak to an administrator but I was simply too traumatized at the time. As soon as they told us that all of her tests came back normal, we just went home as soon as we could and tried to move on. Kindergarten was due to start within a matter of days and we really wanted her to be able to start on time.
Within a month, we saw both the pediatrician and a local neurologist and had the diagnosis of epilepsy. Normally it takes two seizures to diagnose but they felt certain that she had been having absence seizures during the summer so they diagnosed her after only one seizure.
Beth was very succinct when I asked her what she remembered about that first hospitalization. She kept it very simple:
I remember the first MRI and they gave me a button so I could press it if I freaked out and had to get out. And I remember pressing it and they took me out. And then I remember Mom having to wrestle me on the bed and hold me down while they put the IV in me the next day. I remember getting wheeled down to the MRI room and doctor asking me what my favorite flavor was. I said bubblegum and thought I was getting gum. But he put the mask on and I freaked out and they had to hold me down and Mom had to leave the room. I was terrified. I was more scared about the tests and stuff and not really worried about what had happened with the seizure.
We’ll be back with more about those first few experiences tomorrow.
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