The State of Grace

I wonder if any of you are wondering how Grace is doing? Or Eadaoin, Doireann, or Milly for that matter.  Even me.  I disappeared for a bit.  From this blog anyway.

Life is never short of roller coaster-like.  At this point, I have chosen the front car, and I’m determined to ride with my hands up while screaming the entire time.  I’m going to be that girl.  One may as well truly commit to “the ride” so to speak.

Grace is doing remarkably well.  In fact, she is so stable that her psychiatrist is left scratching her head and saying, “I’m not touching anything.”  The last time that Grace experienced any psychosis was before she started taking lithium.  As Grace has said, “This lithium sure is awesome.”  Yeah, it can be.  Her psychosis was most evident when she was in the sixth grade.  Unbelievably, she will be starting high school in the fall.  I cannot believe that I’ve maintained this blog since Grace was in the sixth grade.

We have had zero trips to the Behavioral Health ER since sixth grade.  No inpatient treatment since then either.  No day treatment.  I want to sit back and figure out why in hopes that this might be replicated, but I don’t know if it can be.  I think that schizophrenia spectrum disorders are a lot like autism spectrum disorders.  When you meet one person on the autism spectrum, you’ve only met one person with one representation and/or experience of autism.  It feels almost impossible to generalize their experience to others.  So it would seem with something like schizoaffective disorder, bipolar type.

So, why is there stability in Grace when everyone in the field tells me that there should not be? I can only describe factors that might contribute to her stability.  I can’t provide concrete answers, but neither can the experts:

1.  Grace was diagnosed quickly.  Within two months of her first psychotic episode, we had the correct diagnosis.  This is almost unheard of.  Our journey getting any kind of diagnosis was rather painful, and you can read about the journey here.  Nonetheless, once Grace was psychotic, I moved quickly and used the resources available to us at the time.  Grace was already in an In-Home Crisis Management program wherein a therapist visited our home as many times as needed in order to help Grace achieve stability.  This was one reason I was able to hook Grace up with resources so quickly.  We were already in the system.

2.  Grace saw two psychiatrists who were not afraid to aggressively treat her psychosis.  They also were not afraid to diagnose her with schizoaffective disorder.  They wasted little time in trying whatever medications they could to achieve rapid stability.  Grace was a rapid cycler during her hallucinations.  Suicidal ideation is highest during rapid cycling in people with mood disorders.  Grace was suicidal during this phase.  This was when she was admitted into an inpatient treatment setting for medication management.

3.  I researched the hell out of bipolar disorder, schizophrenia, and schizoaffective disorder so that I could have discussions with Grace’s clinicians about her treatment.  Grace saw pediatric psychiatrists.  What I discovered is that pediatric psychiatrists knew little about long-term treatment of psychotic disorders in children.  They talked about therapy, but they had little understanding of what treatment approach would be most effective.  The therapists were of little help as well.  No one knew what to do or how to proceed.  I had to fill in the gap or no one else would, and that is a heavy burden to bear as a parent.

4.  Biologically based mental health disorders are brain-based.  So, I looked to treatment plans for stroke patients to get a sense of how people who have lost gray matter are rehabilitated.  Many people who have lost gray matter due to stroke return to their lives somewhat impaired but fully functional again.  What if this held true for people with bipolar disorder but, more specific, people with schizophrenia spectrum disorders? Schizophrenia is neurodegenerative meaning that white/gray matter is lost due to the progression of the disease.  Could the brain compensate for the losses by rewiring itself? How might the brain be encouraged to do this? This was my primary question.

5.  The kind of therapy that was clearly the best choice for Grace was skills-based.  Due to white/gray matter loss because of the disease progression, Grace’s working memory and, consequently, her executive function skills were diminishing rapidly.  Her affect was affected and had become flat.  She was also losing ground in her social skills.  Milly, her sister with an autism spectrum disorder, had become more socially adept than her.  So, through a state grant, we were able to have a therapist come into our home for two hours weekly and do skills-based therapy with Grace.  The skills covered everything from breaking down everyday tasks into steps (executive function) in order to accomplish them to more emotionally based skills such as, “When I feel frustrated, what can I do with my feelings?”  I made a chart for Grace’s wall that held little cards.  On the front of each card was a feeling such as ‘sad’ or ‘bored’.  On the back of each card was a list of skills that she could utilize to “ride the wave” of that feeling until it passed.  That is one example of a skill–learning distress tolerance.  Distress tolerance is so important in managing both the negative and positive symptoms of schizophrenia.  Learning coping strategies ties for first place here.

6.  Grace attends a school for students with needs that differ from your average student.  In fact, this school does have a program for truly gifted students as well.  Grace’s program is for students with emotional and behavioral disorders.  She was one of six students in her class with high needs.  Her school is also very skills-based and uses the Nurtured Heart approach in its classroom management.  One of the most important things to remember when it comes to managing biologically based mental health disorders is stress management.  Eliminating unnecessary stress is key in promoting well-being.  Changing the school environment was an obvious choice although not an easy task at all.  Grace’s high school will also be within this intermediate district.

7.  Diet matters.  For example, caffeine interferes with lithium absorption.  Grace, therefore, consumes little to no caffeine.  No soda! We are careful with what she eats, and I can’t say this enough–healthy fats.  The brain needs it.  It’s not possible to heal a brain without healthy fats.  Also, sugar is not her friend.  Sugar and schizophrenia are mortal enemies.

8.  Assume competence.  I do this with all my kids.  I assume that they are competent and able to do whatever is asked of them until they prove that they cannot.  It might look harsh to the outside observer, but, most of the time, they can actually do what I’m asking.  It might be hard.  They might not like it.  It might require ten times more effort for them to do what is a cinch for someone else.  But, can they do it? More often than not, yes.  This is what I want them to see.  Their limitation does not necessarily have to limit them.  It might slow them down.  They might have to arrive at the same point as everyone else from a different direction, but they, too, can get there all the same.  Assuming competence is one of the best things I’ve done for my kids.  When they finally do hit the boundaries of their own abilities, then we know where to focus our therapies if that limitation is something that can be overcome.  And, there is nothing more exhilarating than watching a person overcome something that they never thought they could.

Assuming competence is what has led Grace to overcome a lot of self-perceived limitations and, thusly, learn to take risks.  When a person is able to change their personal narrative from “I can’t do that” to “I might be able to do that,” things change.  They are willing to entertain possibilities and try new things.  They are willing to listen to other people give them suggestions.  Suddenly, when a doctor offers a suggestion, the doctor might be onto something.  There is hope.  And, ultimately, it is the cultivation of hope that keeps all of us going because we all have limitations in our lives.  The presence of those limitations need not rob us of our hope for a good future.  Tenacity and perseverance are forged in circumstances just like Grace’s, and she’s got them both in spades, in part, due to her life experience.

Today, she can babysit.  She can put on a puppet show.  She can problem solve.  She also still hallucinates with insight that they are not real, and she experiences hypomania and very mild rapid cycling.  She is aware of what it is and requests to take a lithium earlier in the day.  There are still bad days to be sure in which she levitates around the house like Creepy Susie, but now she is aware of herself and tries to do something about it.  Developing insight is one of the best skills a person can learn, and I am constantly engaging her on a deeper level so that she continues to develop that insight.

Currently, there is no cure for schizophrenia or bipolar disorder.  It is not, however, a death sentence.  There is hope.  Your life and the life of your child will never be the same if this is your child’s diagnosis, but it doesn’t mean that it’s over and done with either.  Different doesn’t mean bad.  Difficult doesn’t mean bad.

It does make for a bigger life with a lot more twists and turns, but, like I said, I’ve committed to the ride.  Front car.  Hands up.  I am going to enjoy this because it’s my life.  It’s our life.  And, most important, I want her to love her life as much as I love her.

Taking Mental Healthcare Seriously

It’s no secret that there is a crisis in the healthcare system in America.  This is old news.  In fact, it’s not even news anymore.  It’s starting to become just “the way it is”.  Behavioral healthcare, as health insurance providers like to call it, is an even greater problem.  What is behavioral healthcare? As one hospital staff member explained it to me, “If it doesn’t make you sick or require surgery, then it’s not really considered an illness by the hospital and we refuse to bill insurance for it.”  This is where “behavioral health” comes in.

Behavioral health refers to biologically based mental health disorders and mental health in general.  Any disorder that can be found in the DSM-5 falls under “behavioral health”.  In my city, there is a Behavioral Health Emergency Room.  If you or someone you know is experiencing suicidal ideation, then go to the Behavioral Health ER.  When Grace stabbed herself with a fork, we took her there.  If a person with a mood disorder were to suddenly begin rapid cycling, then they would go to the Behavioral Health ER.  Anyone struggling with psychosis, mania, clinical depression not responding to treatment and in need of immediate care and the like would go to a Behavioral Health ER.  These disorders are, in fact, all manifestations of neurological disorders that are treated under the psychiatric specialty rather than neurology.  They are, however, still medical in nature and, therefore, require medical attention.  Why is the opinion even in the medical community otherwise? Does it really matter?

When hospital staff so brazenly declare that mental health disorders are not medical in nature and, therefore, will not bill health insurance for them, they are perpetuating the stigma surrounding mental illness.  Schizophrenia spectrum disorders are neurodegenerative and neurodevelopmental in nature.  They are the definition of “medical”, and yet staff members in hospital billing departments still maintain a belief that this cluster of disorders represents something more like Dissociative Identity Disorder (DID) or just bad behavior brought on by a combination of stress and poor distress tolerance.  What is the likelihood that a person experiencing psychosis will seek medical attention then if hospital staff are untrained and ignorant? What is the likelihood that hospital staff will show respect to patients struggling with psychosis, mania, or depressive symptoms if they believe that it’s “all in their head” and with some real effort these patients could simply heal themselves?

What perpetuates this stigma within the medical community itself? Let me give you an example from my own community.  I’ve written a few posts on my ex-husband’s anxiety disorder.  He has struggled most of his life with almost crippling anxiety.  Persuading him to overcome his anxiety and see an internist just for a physical examination in which he could also inquire about anxiety treatment was a huge success.  It took 16 years of convincing.  When he asked for a list of psychiatrists from his internist, the clinic gave him a list of recommended psychiatrists all of whom were no longer taking patients due to either being retired or dead.  This clinic had not bothered to keep their list of psychiatrists up to date! They certainly keep their other lists of recommended specialists up to date.  Are they giving men and women lists of recommended oncologists who have died and/or retired? Doubtful.  This is profoundly troubling since, on average, twice as many women die by suicide annually than they do from breast cancer.  Three times as many men die by suicide annually than they do by prostate cancer.  And, yet, we are surrounded by charities and reminders that breast cancer kills, and we should do something about it.  I agree wholeheartedly.  Men should get physical exams and take care of their bodies.  But, a well-known clinic can’t be bothered to maintain a list of psychiatrists so that their patients can receive psychiatric care and follow-up? Why?

Another large and well-known mental healthcare service provider in my area sent out a letter two weeks ago stating that they would be discontinuing their psychiatric services.  Period.  There was no list of local treating psychiatrists who current patients could call in order to maintain their current level of care.  Just a notice of “We’re closed for business.  Good luck getting those meds filled.”  This is shocking.  Psychiatry is a medical speciality.  Patients under the care of a psychiatrist are receiving specialized care, and it borders on unethical to suddenly stop care without transferring that care to another physician or, at a bare minimum, providing a list of physicians who are taking new patients.  This attitude, however, is prevalent within the medical community itself, and this is what perpetuates the stigma within the medical community.  If doctors, therapists, and administrators themselves believe that behavioral healthcare is simply optional and not vital to the health and well-being of their patients, then what does this say about the medical community’s view of mental health? A person receiving treatment for Multiple Sclerosis would not simply receive a letter from their neurologist stating, “I’ve decided to drop you as a patient.  Good luck finding care elsewhere,” but patients with diagnosed mental health disorders are treated like this quite often by their own mental healthcare providers.  Why?

I think that the medical community is caught between two views–the old and the new.  Animal models are showing that most mental health disorders from depression and OCD to bipolar disorder and schizophrenia spectrum disorders are biologically based meaning caused by the enteric or primary nervous system.  The research is consistently pointing to the gut or the brain.  It is an exciting time to be a neuroscientist.  Deficits in the function on a brain level often manifest behaviorally, however, and many people–even doctors–are very uncomfortable with unusual behaviors.  It’s easy to blame trauma and shove someone out the door.  Even trauma, however, becomes brain-based as the success of treatments like EMDR are showing.

We are socially conditioned to feel ashamed when we feel anything but happy and good about ourselves.  If you don’t feel happy, then pull yourself up by your bootstraps! Exercise.  Change your diet.  Lose weight.  Get a makeover.  Go for a walk.  This might work if you don’t have a biologically based mental disorder, but who, within the medical community, is willing to consider this? Furthermore, who is willing to consider that a child might have bipolar disorder or a schizophrenia spectrum disorder? What physician is willing to say that bipolar disorder, for example, is as serious as cancer and deserves the same amount of attention and care? The number one cause of premature death among those diagnosed with bipolar disorder is suicide with 15-17% taking their own life and up to 50% attempting suicide at least once due to the negative symptoms of the disorder.  These are shocking statistics, and I don’t think most physicians consider this.  Until the medical community at large is able to take mental health seriously–as seriously as it takes cancer and heart disease–there will be a lack of quality care and treatment for people struggling with mental health disorders.  Perhaps then we’ll begin seeing sparkly new hospital wings dedicated to mental healthcare right next to the breast cancer and heart surgery wings.

That will be a good day.

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