Texas Mom’s Son Misdiagnosed, Faces Rare Brain Disorder

Casey Daniel, a mother from Texas, was told that her young son Witten had the flu, but within hours, he became paralyzed—a shocking turn of events triggered by a rare brain disorder that causes cells to bleed.

The little league MVP quickly lost the ability to walk, talk, and even breathe on his own within just 24 hours.

Doctors soon discovered he had a cavernoma, which is a cluster of leaking cells close to the brain stem.

Highlights

• Mom says her son was misdiagnosed with the flu just before paralysis set in.
• An MRI exposed a cavernous malformation, a rare disorder affecting 1 in 2,000 people.
• Connie Lee, CEO of Alliance to Cure, points out that seizures and face drooping are significant warning signs.

The prognosis wasn’t promising; Casey learned that her son might never walk again due to this condition affecting a mere 0.05% of the population.

Another Case of Misdiagnosis

Connie Lee also experienced a medical anomaly with her child. She remembers how her four-month-old daughter struggled to sleep and became increasingly irritable over a week.

Much like Witten’s case, doctors dismissed it as a minor issue at first.

Initially, the pediatrician believed the child could have an earache and prescribed medication after noticing a raised fontanelle.

Unexpected Findings from an MRI

After some troubling symptoms, such as projectile vomiting, prompted another visit to the doctor, an MRI at a children’s hospital was requested.

The MRI revealed multiple tumors within her daughter’s brain, the largest measuring about four centimeters.

“She was in crisis,” Lee recalled. “Had she not had the brain surgery that day, she would not be with us now.”

Understanding Cavernous Malformations

Lee, who is also the CEO of the Alliance to Cure Cavernous Malformation, explained that this disorder is characterized by abnormal, leaking blood vessels resembling raspberry clusters.

These vessels can occur anywhere in the brain or spinal cord, and they typically cause blood to flow slowly.

Recognizing the Symptoms

She mentioned that focal seizures are a common symptom of cavernous malformation, affecting about half of those diagnosed.

These seizures can lead to visual and speech issues, involuntary actions, and other bizarre sensations while the person remains conscious.

Other Warning Signs

Lee pointed out that face drooping, vision problems, numbness, and weakness in limbs can also indicate cavernous malformation.

Witten’s case is particularly acute—his condition caused hemorrhaging, which is among the most severe forms of the disorder.

Children at Higher Risk

Children and infants often face sudden health declines that can go undetected until a severe hemorrhage occurs, largely because they might not accurately express their symptoms.

Lee noted that among young kids, symptoms like projectile vomiting can easily be mistaken for the flu.

“And often, we see a state where it becomes emergent, with things like loss of muscle tone,” she mentioned, echoing Casey’s experience.

When to Seek Help

Lee emphasized that anyone experiencing symptoms should head to an emergency room. Face drooping, while sometimes benign, can signal more serious issues that require immediate attention.

While focal seizures might not need immediate emergency care, it is still essential to consult a doctor who can provide further guidance.

Diagnosing Cavernous Malformation

The most assured method for diagnosis is through CT and MRI scans. While many can recover or live with the condition, it’s crucial to catch it early.

Lee explained that the diagnostic process can be complicated, as symptoms are sometimes dismissed as psychiatric or due to other issues.

Children: Complex Cases

For children, the challenge is their inability to stay still for the MRI, often requiring sedation for successful imaging.

Witten’s Journey Back to Health

Fortunately, Witten’s rapid decline is quite uncommon, and he, like Connie’s daughter, is recovering well.

Casey’s persistence to challenge the initial diagnosis led her to search online for solutions, ultimately connecting with neurosurgeons at UTHealth in Houston.

Now, at seven years old, Witten is back home and gearing up to return to the baseball field.

Community Support for Witten

It seems that the internet community has rallied around Witten, echoing the shared stories of these unusual medical challenges.