One day, seemingly out of nowhere, my friend Lisa’s son, Ethan, stepped off the school bus in an explosive fury. He threw his backpack down with force and uttered the alarming words, “I want to die.” In a state of frantic energy, he dashed to the basement, seized a hammer, and, with the intensity of a child who had just consumed a dozen energy drinks, yelled, “Kill me, kill me, kill me.”
Lisa, terrified, somehow managed to wrest the hammer from his grip. She pulled him close, desperately trying to soothe a child she hardly recognized, but he was inconsolable. He broke free, flinging himself onto the floor and against the walls, crying out in anguish.
On that fateful day, December 10, 2018, Ethan, a boy known for his vivacity, curiosity, and infectious smile, was reported by his teacher to be sluggish and withdrawn. That morning, when told he would have to attend his sister’s dance class with their babysitter, he erupted in uncontrolled sorrow, unable to engage with his peers.
No one could comprehend the sudden shift in his demeanor.
In hindsight, there were subtle indicators that something was wrong. In the months leading up to that distressing day, Ethan exhibited unusual obsessive-compulsive behaviors. He insisted on showering and styling his hair perfectly each morning and would only wear specific types of clothing. After a family bowling outing, he became irrationally furious at losing and expressed he was having “bad thoughts.”
Days later, he was rushed to the emergency room, where doctors conducted blood tests and a CT scan. Stunned by the findings, he was transferred to another facility, where he was quickly diagnosed with severe anxiety.
Lisa faced the heart-wrenching decision to leave her son in an inpatient psychiatric ward for a week. Heartbroken, she returned home, feeling utterly defeated. Ethan was prescribed Prozac and began learning coping strategies for anxiety. Afterward, he was discharged on Christmas, and Lisa eagerly anticipated reconnecting with him. She had stocked up on treats, his favorite snacks, and new books.
However, just hours after their arrival at home, Ethan curled up in a ball, his complexion turned pale, and his behavior regressed. He began exhibiting tics and fluctuated between daze and aggression, necessitating another visit to the doctor. Yet, despite numerous tests and consultations, no clear answers emerged.
Lisa gradually became accustomed to a new normal. Her once vibrant son was now making strange noises, struggling with uncontrollable tics, hiding under furniture, and repeating phrases incessantly. Every night, she checked on him repeatedly to ensure he was still breathing.
Finally, an outpatient psychiatrist offered a glimmer of hope. She believed his issues stemmed from neurological causes rather than psychological ones, noting his unusual gait and dilated pupils. This led to another referral to a children’s hospital.
A child neurologist concurred with this assessment and suggested, for the first time, that Ethan could have Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). According to the PANDAS Network, this rare condition affects roughly one in 200 children. Discovered in the 1990s, it remains a controversial diagnosis, with some medical professionals dismissing its existence and many insurance providers refusing to cover treatments.
Ethan was admitted to the hospital and tested positive for strep—an indicator of PANDAS—as well as mycoplasma pneumonia. An MRI revealed abscesses on his tonsils, and an ENT specialist removed them while placing Ethan on Augmentin, the standard treatment for strep.
Despite receiving high doses of antibiotics, Ethan’s health continued to decline. He missed months of school due to aggression, obsessive-compulsive behaviors, and debilitating anxiety. Once an avid reader, he lost interest in books and suffered from frequent uncontrollable urination, severe memory issues, and vivid hallucinations.
Ethan became a prisoner in his home, a hospital, or a doctor’s office. His sister had to lock her door to feel safe from him, and Lisa lost her job due to the extensive caregiving required.
Determined to find help, Lisa sought out a neuropsychologist specializing in PANDAS and traveled hours for a consultation. He confirmed the diagnosis and recommended immunoglobulin (IVIG) treatment, which research suggests can significantly improve emotional stability and obsessive-compulsive symptoms in severe PANDAS cases.
Now, Ethan receives IVIG treatment weekly, and there have been some positive changes. He no longer runs away and has fewer episodes of uncontrolled urination. Occasionally, he picks up a book or draws, and he can engage socially to some extent, though he still faces numerous challenges, including recurring infections. Recovery is still a long way off.
As strep infections surge this season, it’s crucial to recognize the warning signs of PANDAS to ensure timely diagnosis and treatment. Children may exhibit one or more of the following symptoms (Ethan experienced them all):
- Obsessive-compulsive disorder symptoms and/or tics
- Attention-deficit/hyperactivity disorder (ADHD) symptoms, including hyperactivity and inattention
- Separation anxiety, leading to clinginess and difficulty being apart from caregivers
- Mood changes like irritability or emotional volatility
- Sleep disturbances
- Bedwetting at night or frequent daytime urination
- Motor skill changes, such as altered handwriting
- Joint pain
Although the past year has been a devastating journey for Ethan’s family, they remain united in raising awareness about a condition they had never heard of before it altered their lives. For more insights into this topic, visit this informative blog post or check out this resource on intrauterine insemination.
Summary
Sudden behavioral changes in children can sometimes indicate underlying health issues, such as PANDAS, a rare condition linked to strep infections. Recognizing the warning signs is essential for timely diagnosis and treatment to ensure children’s well-being and recovery.
Keyphrase: PANDAS in Children
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