Conversion Disorder with PNES, an uncommon mental health condition
“Real strength is when you are strong when it would be understandable for you to fall apart” – Author Unknown
While over a year has passed since her last seizure, having developed an uncommon mental health condition that left her having to learn how to talk, walk, and at times, see again. We still hold our breath every time she sneezes, and we watch her left hand expecting the tremors to start again. We were grateful to discover how we could sometimes catch and stop them if we noticed her left hand twitching ever so slightly.
It was November 30, 2017. The day was like any other typical day. Nothing significant or overly stressful stands out in my mind leading up to the day. Life was busy and hectic for our family. However, that’s to be expected with 3 busy teenagers, a husband that works full time at his corporate job, and me running and working all aspects of our family restaurant. Our life could get chaotic, but it was good.
My oldest daughter, Alixandria, who was only a few weeks away from turning 16, started the day as a typical teen enjoying her first year of high school and ended the day in a hospital bed not knowing who she was, had lost the ability to talk, and had no control over any of her motor skills.
Remembering back to that night makes my stomach tense up, puts a lump in my throat and tears in my eyes. This was hands down the hardest thing I’ve ever experienced.
Here’s the story:
It was about 9 pm. My husband, Bryan, and I were laying in bed watching TV. Ali’s boyfriend, Tyler, brought her home from a school activity they had been at together and told us he was concerned about her. He said that he had left her in the hall to go grab something real quick, and when he came back, she was on the floor and appeared to have blacked out, but that after a little bit she seemed to be back to normal. He brought her straight home. On the way home she had a small (what seemed like a seizure) in his car. I was concerned but she seemed okay to us, just tired and had a headache. She was her usual chatty self otherwise.
The 4 of us sat and talked for about 15 to 20 minutes, debating if I should take her to the emergency room or if we’d be okay waiting until the morning to take her to our doctors office. Then, Bryan and I witnessed our first small episode. Her left hand started to twitch and her eyes rolled back into her head. It was as if she blacked out while her body twitched slightly.
That’s it. We’re going to the ER.
Alixandria, Tyler, Bryan, and I all loaded into the car.
We drove to a nearby hospital and her symptoms quickly began to escalate after getting there. What had started as small tremors quickly turned to violent, head to toe, shaking; like a fish out of water. The seizures were now happening about 15 minutes apart. Each one seemed to get stronger and last longer than the one before. However, after each seizure she would go back to usual chatty self just with a worsening headache.
That quickly changed.
By this time, I was scared, so scared. The ER doctor was deciding what tests we need to run. Completely unsure of what was happening with my Bug.
I said to Ali and our little group “I should call your daddy and let him know what’s going on”. That was her stressor. She almost screamed “No. I don’t want him here” (I, or Ali, may or may not share more on this relationship in the future, for now, I’ll simply say it’s strained).
As a response her body went into the worst and most violent seizure that we’ve experienced since they started. She shook violently for what seemed like an eternity. We had to stand around her to make sure she didn’t fling herself from the bed or hit her head too hard on the side rails. Tyler, Bryan, and I stood around her not knowing what to do. I talked to her, told her she would be okay and that I loved her. I tried my best to comfort her. She didn’t wake from that episode for what seemed like forever, but I think it was probably about 10 minutes. When she regained consciousness she could barely speak and couldn’t control her motor skills. She began to cry, trying to make sense of what was going on and why she couldn’t speak?!
Getting Worse…
Within minutes of awaking from that intense seizure, it was as if her brain was attempting to help her by taking her away, she went into another bad one. When she awoke from this one she was suffering from amnesia. She looked around the room at each of us, looking so frightened, she didn’t know who she was, where she was, or who any of us were. She hid under her blanket shrinking into a fetal position.
My child was inconsolable, she sobbed uncontrollably, she was so afraid. She wouldn’t let me comfort her. She didn’t want us, any of us, near her. I tried to rub her head and tell her that everything will be okay; she quivered and pulled away from me. It was as if she was a whole other person. Her frustration and agitation grew because she couldn’t communicate. All I could do was be there, trying to show her pictures on her phone, telling her who she is and what we love about her, telling her who we were, and trying to convince her that she was safe. It felt hopeless.
I remember fighting back tears, thinking, did I just lose my baby girl as I knew her? Did this just become our new normal? What did all of this mean for her future? How will be ever make her feel safe?
She was growing increasingly scared and agitated until her brain took her away into another violent seizure. It took her longer to recover from that episode. It felt like time stopped.
That episode was a tender mercy, when she awoke her memories were back. Her speaking and motor skills were still virtually non-existent but at least we could comfort and console her and she knew she wasn’t alone. Unfortunately this was only the first of many of these amnesia type of episodes to occur over the next 6 months.
It had been about 2 hours since we got to the hospital. I had held it together thus far but it had come to the point where I needed to excuse myself “to go use the restroom”. Exhausted and distraught, I had kept myself strong for her as long as I could. I was losing my emotional strength and control, and I had to go have a melt down where she wouldn’t see so that I could return to the room with the strength that she needed and deserved from me.
Feeling Defeated and scared
Once I was a few yards from her room the tears began to flow. I sobbed. I ugly cried. This was almost unbearable. I felt completely powerless. It felt like someone had put a boulder on my chest, I could barely breathe. I had no control over this situation. I couldn’t make this better. As her mom I always made things better. I always took care of her. I felt defeated and so very frightened.
The ER doctors decided we need to transport her to Primary Children’s Hospital by ambulance. They had no idea what was going on and felt that Primary’s might have more answers with her being an adolescent.
I went with her in the ambulance, even though they resisted and seemed annoyed that I was going with her. There was no way I was leaving my baby alone! I was prepared to go full on psycho if necessary. There was no way they were taking her without me. Luckily it didn’t come to that.
She had 3 seizures in the ambulance on the way to Primary Children’s.
I hated seeing her strapped to a bed but I quickly became grateful for those straps; between the violent shaking of her body and the bouncy ambulance ride (do ambulances even have shocks?) I was relieved that she wasn’t able to bounce right off the bed and hit her head on the metal and sharp edges we were surrounded by.
Tyler and Bryan drove the 45 minutes to meet us at Primary’s. I imagine that felt like a very long drive for them.
The seizures were coming more quickly and they were fierce.
We spent the next two nights there, Bryan and I sharing a twin bed to “sleep” in (there’s really no sleeping at times like this) and Tyler settled into the chair that was pulled next to Ali’s bed.
A side note about Tyler:
We love this guy! He was 17 at the time. He was so brave, so emotionally strong. I remember him saying something along the lines of “I hope you don’t mind that I’m here”, while at the hospital, I told him I was glad he was with us, and I genuinely was. He responded “good, because I was going to be here either way”. He was a rock for Ali. Having him there gave her comfort.
They are still boyfriend and girlfriend and they had been friends for years before that. He’s a great young man. We completely adore him. Regardless of what their future together holds as a couple, I’m so grateful for the way he supported not just Ali but our whole family through this experience and that he has stayed a part of our lives since. It was a lot to handle for anyone, but especially a teenage boy. There was a long and uncertain road ahead and we would have understood if he’d stepped away.
Back to the story…
I was so frightened. Desperate for someone to make her better or tell me how I could make it better. I was surrounded by people but felt hopelessly alone.
The next 2 days are kind of a blur of tests, seizures, doctors, more seizures, visitors, even more seizures (which we were taught to call episodes). And in addition to all that, trying to be sure my other 2 children were okay, making sure our restaurant was covered and running as best it could without my time and attention. It was perhaps the very most stressful week of my life and it was just the beginning of the 6 stressful months to follow.
An Uncommon Mental Health Condition, Conversion Disorder
Once all the test were ran and the doctors had collaborated they came back with the diagnosis of a uncommon mental health condition, called Conversion Disorder with Psychogenic Non-Epileptic Seizures.
We will be continuing to share more about the uncommon mental health condition Conversion DAsisorder, what it is, and what it looked like for us for the next 6 months after this awful week, you can subscribe below to get notified when posts are shared.
Primary Children’s Hospital
I love Primary Children’s, they do incredible and important work that greatly impacts the lives of children and their families. They were, and remain to be, my go to when I give monetary donations, but they definitely dropped the ball with empathy and compassion when I was the most scared I’d ever been in my life. They knew Ali would be okay with some time and therapy. They said that if we resumed life like normal that she’d be back to her usual self “soon” (Soon. Soon could be anywhere from days to months. And for some people with Conversion Disorder, it can be years or even a life time struggle).
The conversation with the doctor overseeing Ali was very cut and dry. To the point. Just the facts. Even when I voiced my fears and concerns, their responses lacked emotional understanding that was equal to my own lack of understanding. That’s okay though. I suppose in the scheme of things, we were the lucky parents, we were taking our child home. That empathy and compassion was better spent on other parents that may not get to take their children home and/or have a much longer and bumpier road ahead than we’ve had.
While Conversion Disorder is an uncommon mental health condition, and that it’s good that there’s a limited number of people struggling with it, there appears to be a limited amount of research and information readily available to those in need of it.
Thank goodness for what information that I was able to find on Google, the internet, and through the Conversion Disorder Facebook Support Group. With an official diagnosis Bryan and I were able to learn more about the uncommon mental health condition, Conversion Disorder, and gain a better understanding of what we were up against. Even with all of that information available to us, we were still unprepared for the intense challenges that followed.
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