What If It Isn’t Schizophrenia?

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What If It Isn’t Schizophrenia?

For three years, my son has been sick.

Three years of hospitalizations.

Three years of escalating medications.

Three years of watching him lose pieces of himself—his independence, his confidence, his hope.

And for three years, I have carried a question I could never silence:

What if it isn’t schizophrenia?

The Question That Wouldn’t Leave Me

From the beginning, something didn’t fit.

My concerns were often dismissed—sometimes gently, sometimes with quiet finality. I was told this was fear, denial, or a mother struggling to accept a devastating diagnosis.

But when you live this closely—when you watch symptoms evolve, treatments fail, and new problems appear—you learn to trust the internal alarm that won’t shut off.

When my son entered McLean Hospital, he was taking 13 pills a day. Today, it is 17, including lithium and powerful antipsychotics. These medications affect the brain, the nervous system, the kidneys, the heart, and the gut.

Despite all of this, he has not improved.

Instead, he has developed:

Severe anxiety and agoraphobia
Cognitive decline
Chronic nausea and vomiting
Tremors and physical instability
A deep, devastating depression rooted in hopelessness

He has been told—implicitly and explicitly—that this is lifelong, chronic, and something he must learn to endure.

And still, my question remained.

Three Years of Asking

For the past three years, I have consistently raised the same concern with every doctor, social worker, and physician involved in my son’s care.

I repeatedly asked whether neurological imaging of his head should be done.

At the same time, I continuously reported a symptom that never truly stopped:

Severe, persistent, uncontrollable vomiting.

Not occasional nausea.

Not situational anxiety.

But heavy, repeated, sometimes projectile vomiting that has occurred on and off for three years.

Each time, it was attributed to medication side effects, anxiety, or gastrointestinal causes. No head CT. No MRI. No neurological workup.

Nothing was done.

This was not a single missed opportunity. It was a pattern.

A Clue I Was Given—and Told to Let Go

About a year and a half ago, a close friend of mine—known to many on my site as Bird, or Cardinal—shared an article with me. It described how Lyme disease and related infections can trigger autoimmune reactions that mimic schizophrenia.

It made immediate sense to me.

My youngest child barely goes outside and yet developed meningitis when we lived in Boxford—so I already understood how unpredictable illness can be.

But my older son, Chance, has lived in the woods his entire life. As a child, every free moment he had was spent outside—exploring, climbing, wandering. If anyone in our family were at risk for tick exposure or Lyme-related illness, it would have been him.

I brought this to his doctors.

It was dismissed.

They felt he fit the criteria for schizophrenia and did not appear interested in exploring anything else. I was treated kindly—but dismissively. As though I were a mother grasping at straws rather than someone asking reasonable medical questions.

No one investigated further.

The Medical Crisis That Changed Everything

Last week, routine bloodwork showed worsening kidney function, raising concern for possible acute kidney injury. Given that my son is on lithium, this immediately raised the risk of lithium toxicity, which can be life-threatening.

Because of this, his primary physician requested that he be sent to Newton-Wellesley Hospital for urgent evaluation.

Importantly, that same physician also requested neurological imaging—specifically a CT scan and MRI of my son’s head—given the vomiting, neurological symptoms, and overall clinical picture.

This was not an emotional request.

It was a medical one.

When the System Didn’t Follow Through

At Newton-Wellesley Hospital, my son was evaluated for lithium toxicity. However, the requested neurological imaging was not performed.

Instead:

A CT scan of his abdomen was done
He was sent back to McLean with a diagnosis of a “stomach bug”

I later learned that no head CT or MRI had been done, despite being ordered.

My son knew—and I knew—this was not a stomach bug.

The Letter — and the Truth That Followed

After discovering that the neurological imaging had not been performed, I wrote a letter—direct, respectful, and firm—requesting further testing. I asked that if the team disagreed, they document why in his chart.

That is when my son’s doctor called me personally.

He told me something critical:

He had originally requested neurological imaging, but Newton-Wellesley refused to perform it.

Because of that refusal, he made the decision to send my son to Salem Hospital, where the head CT scan was finally completed.

He told me he agreed with me “150%.”

He validated my concerns.

He stated clearly that more testing should have been done years ago.

That moment mattered.

The CT Scan — and What It Revealed

The head CT scan showed a partially empty sella.

No one called me to explain this finding. Instead, the results were discussed with my son—a young man struggling with agoraphobia, severe anxiety, and cognitive overwhelm.

He likely heard reassurance. Minimization. Medical language without context.

But I kept digging.

Digging Changes Everything

A partially empty sella is often incidental—but not always.

It can be associated with:

Increased intracranial pressure
Chronic headaches and vomiting
Hormonal disruption
Traumatic brain injury

That last point stopped me.

From the very beginning, I had questioned whether a brain injury could be part of my son’s story. That concern had been dismissed early and never revisited.

As I continued digging, I learned about autoimmune and neurological testing—testing often recommended in atypical or treatment-resistant psychosis. Tests that, according to his chart, were never done.

Until now.

For the first time, it appears that someone is finally listening.