Panic and Frustration

Until now. Until Ella couldn’t walk and there was no easy explanation.

I’m banging my head against walls here, and I can’t see a way to find help. We’ve seen specialists who admit their confusion at her symptoms, and then decide that because they don’t know there is no answer. In the face of no answer, they label it Conversion Disorder. 

Conversion has become the most hated word in my vocabulary. It means a psychosomatic illness caused by great stress. There are supposed to be strict criteria met before a 10 year old girl can be judged to have a serious mental illness, but there doesn’t seem to be any interest in meeting them. The first of these criteria is that testing must have ruled out all physical/biological causes. They’ve done very little testing. She’s had one MRI because I insisted on its being done. When it came back normal, the neurologist said (this is a paraphrase, but pretty damn near a quote) “I don’t know what else I can do here. Her symptoms don’t make sense to me, so I’m going to call it Conversion. She should see a psychiatrist.”

So she did.

The psychiatrist spent just over an hour talking to her before saying “She’s very old for her age, which I would expect in a child who has a chronic illness. She’s logical and pragmatic, wonderfully well-adjusted, and I see absolutely nothing which would lead me to suspect Conversion.” If a girl in a wheelchair can skip, she did that day. We were both relieved that it wasn’t all in her head. Now, we thought, the other specialists would test her. We had slain the specter of Conversion.

We were wrong.

It doesn’t seem to matter what the psychiatrist found. The neurologists are locked into what they see in her chart. Dr. M wrote down Conversion, and everyone else is following like lemmings. Our fab GP set up a nerve conduction study, only to have it cancelled by a neuro who wanted to know why he was “wasting my time with a psych patient.” There seems to be no ability to think outside any box.

When she first started getting sick, people said I’d have to fight for a diagnosis. I assumed that they meant with the insurance company, or to find specialists. Our insurance company has been great, and we can find doctors. What I didn’t understand was how much time would be spent fighting laziness and apathy. Too many physicians are there just to collect a paycheck, and the drive to heal anyone has left them long ago.

We’ve learned in the past few weeks, from personal experience and intense research, that Conversion Disorder is the fallback of puzzled neurologists who have no ideas. Over and over, I’ve read stories of people sent to psychiatrists for things which turned out to be real…and time was wasted and that time can do terrible damage. I’ve read medical journals and government statistics that show as many as 40% of people diagnosed with Conversion are found to actually have a biological cause within five years, and an additional 20% within ten years. If those pretty standard number are correct, then a minimum of 60% of cases are misdiagnosed. 60%.

And that’s what I’m running up against. We’ve hit the wall of everyone’s favorite cop out, and nothing else matters but maintaining that label on her. It doesn’t matter how many times we show that her symptoms don’t fit, or that the psych disagrees….they shake their heads in confusion and say its in her mind.

I’m screaming for help in a room and no one can hear me….

And so the panic attacks have started. 

Because she’s worse and I can’t get help for her. She’s lost all strength and 95% of her muscle control. Her legs have lost all feeling. I’m terrified that it will start to move upward and that she will die before anyone listens. That’s the fear. That she will die and I won’t be able to help her.

For the first time in my life, I don’t know what to do….so my body has responded in the only logical way…trying convince me that I’m either having a heart attack or slowly being smothered by an elephant on my chest. (Yes, I’ve seen the doctor. I’m fine.) Because nothing helps in a crisis quite like gasping for air and feeling my imminent death approach with every waking moment. I’m sure there’s an evolutionary reason why this makes sense, but it sure isn’t helping anything now.

*** We’re going to play another fast round of Crowd Sourcing a Diagnosis tomorrow. Bring your medical books, google pages, and your thinking caps. If the doctors won’t look for answers, by golly, we will.