Progressive Regression

Well, it’s been interesting around here to say the least.  I’ll get right to the point: Grace is not doing well.  I keep hoping that she’s just having a bad day, but she’s not.  She’s getting worse.  Her antipsychotic medication was increased, but she’s still hallucinating.  Her mood stabilizers are not working.  She’s stuck in this purgatory of the dreaded mixed state.  She’s elevated, depressed, and paranoid at the same time.  She’s unable to make decisions, and she’s belligerent.  She is losing her ability to discern what is socially appropriate so her sisters are very reluctant to bring their friends to our home now for fear Grace will do something…odd.  The decline is astounding.

Grace had yet another migraine last week, but I had to work so I dragged her along with me.  My business partner and I were out and about Grace in tow when she suddenly declared, “I see the men.  I see the men! One of them has a really big gun this time! It’s huge! It’s really big! The one with the brown bowler hat has a big hunting gun.  They’re everywhere I look.  Do you know what I mean? Those big hunting guns?” From there she wouldn’t stop.  Every few minutes she would interrupt, “They’re over there!” She looked pale with dark circles under her eyes.  My friend looked at me.  I looked at her.  She’s been with us since the beginning.  She’s been my companion at the Behavioral Health ER a few times now.  She’s known Grace for years.  She remembers Grace BEFORE.  This Grace? This isn’t the same Grace.

“She’s deteriorating.  I don’t know what’s going on.”  

“Yeah, there’s some kind of regression present.”

“She’s worse in the afternoons, and the evenings are nightmarish.”

“Some kind of ‘sundowning’ effect.  Michael talks about that with Jani.”

She’s talking about Michael Schofield, father to Jani Schofield, one of the youngest children to be diagnosed with schizophrenia.  Jani was six years-old when she was diagnosed, and she’s still not stable a few years later.  The Schofields have been through hell and back, and they have been heavily criticized for putting a young child on what is sure to be frightening cocktail of drugs.  Let me explain something before you judge Michael and Susan or even me.

Schizophrenia is not just some mental illness contracted by people like my daughter, and now little Gracie is sad or weird.  Schizophrenia destroys brain tissue.  Do you know why Grace can’t make decisions now? Because she’s lost gray matter.

According to Dr. Paul Thompson, professor of neurology at UCLA:

Mapping this timeline (of brain tissue loss) was one of the things we wanted to accomplish through our imaging studies of young people with schizophrenia. From images taken at regular intervals of literally hundreds of patients and control subjects, we created an aggregate image of the disease process — basically, time-lapse movies of what happens when and at what rate. In the movies, you see this traveling wave of tissue loss, starting with the parietal cortex and then relentlessly sweeping forward into the frontal lobe. We’ve calculated the tissue loss at over 5 percent a year, which is comparable to Alzheimer’s disease — brain cells are actually dying as a result of schizophrenia.

It appears that the amount of tissue loss depends upon the age at which you develop the illness. If it comes on in your early teens, up to 25 percent of your brain tissue can be lost over a period of about five years. That is very severe — comparable to Alzheimer’s in the degree of damage, but different in that schizophrenia does not attack every area of the brain.

If you develop schizophrenia later, with your first psychotic episode in your latter 20s, brain tissue loss appears to be no more than 1 percent a year. Because it is a much slower process, the opportunities to intervene with drugs are greater. In brain scans of people who developed schizophrenia later and have lived with the illness for a long time, we see maybe only 10 percent to 15 percent of tissue loss over all. (Visualizing Schizophrenia)

While Alzheimer’s seems to affect the entire brain, schizophrenia damages the parietal cortex, responsible for helping us process our sensory experiences, and frontal lobe, which helps us to “organize our lives, go to work, analyze information and make decisions”.  Can you imagine losing 25% of your entire brain but solely in the parietal cortex and frontal lobe? That’s what children like Jani Schofield and possibly my daughter are up against.  This might explain why Grace is gripped by crippling migraines.  Her brain tissue is dying.

She can no longer clean her room without an adult helping her.  She can’t make decisions anymore of almost any kind.  She can’t regulate herself.  The only way to stop the progression of the disease is with drugs.  Would you deprive a child of whatever future they might have with whatever intact brain tissue they might be able to keep by attacking their parents for using whatever drugs are available to stop the progression of this awful mental illness?

At the rate of the progressive regression I see in Grace, she will never leave the house.  She will never marry.  She will never go to college.  She will never be able to fulfill her dreams because she will lose her mental capacity to live a normal and fulfilling life.  Is it any wonder that 10% of schizophrenics commit suicide?

My husband and I are living in a reality that feels surreal most of the time, and we hold onto our hope.  But, I can’t tell you how devastating this reality is.  It’s hard to describe how it feels to watch your beautiful girl deteriorate day by day knowing that the brain that grew and developed in my own body 12 years ago is dying off, cell by cell, taking pieces of that child with it, little by little.  The depth of suffering that I witness in her on a daily basis which, in turn, causes my other daughters to suffer is almost more than I can tolerate sometimes.

For the record, schizophrenia and all its spectrum disorders is not autism.  It’s not a manifestation of childhood brilliance.  It’s also not a result of bad parenting.  It’s a devastating organic brain disorder that needs treatment in an attempt, however feeble, to stop the disease progression.  One can’t tell a child to just live with it and remove all treatment.  One can’t CBT it away.  No amount of cognitive behavioral therapy will ameliorate schizophrenia because schizophrenia is not a behavioral problem.  You can’t perform a functional behavioral analysis on schizophrenia anymore than you can on dementia resultant from Alzheimer’s.  Are you getting it?

Aaaanyway….

We see Dr. Klerpachik tomorrow.  I don’t know what he’ll say.  I know what I’ll say.  We need a med change because the Lamictal ain’t workin’.  Get this kid on something that will.

Resources:

Visualizing Schizophrenia (New York Times article)

The Jani Foundation founded by Michael and Susan Schofield

January First by Michael Schofield

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7 thoughts on “Progressive Regression

  1. At least there’s research and understanding and help around you, right? I hope she gets a drug that works and I’m sorry that you (and of course Grace) are going through this. I had no idea about schizophrenia’s destruction…my heart hurts to read this.

    • I didn’t know either, and there’s this odd relief that now I know. I watch it and can point to a cause. We need more help. Grace’s case manager is trying to dig some up for us. There aren’t a lot of local kids or families with this because it’s less common in the young. I’ve got a couple of friends…and one friend in particular. But, I’m an optimist.

    • I have no idea. There has been some luck with drugs that treat myelin degeneration. The three current theories out there right now suggest that SCZ is caused by: 1) brain pruning gone mad 2) myelin deterioration 3) dopamine problems.

  2. I really don’t know what to say, MJ. My heart goes out to you. As a parent, we suffer as our children do, so you must be sufferign through untold aginy right now.
    God bless you and yours.

    • This is hard. It’s hard to watch to be sure. I compartmentalize all the time, and I try to focus on what i can do, and i always stay in the moment. I don’t look back or ahead. She’s really an extraordinary person. Her courage is astounding. I’m humbled to be her mom.

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