Is your child mentally ill? Maybe not.
Overnight, a child transforms from happy-go-lucky to anxious, irritable, and obsessive. It seems to the family that the child must have been possessed in their sleep. This happened to my pre-adolescent daughter last winter. Even as a family physician also trained in Integrative Medicine, I did not know what had happened to my little girl.
An Abrupt Onset
While my family and I were spectators at a wrestling match, she began grunting, holding her ears, and banging her head with her hands. I thought she must have an acute illness or low blood sugar, but this was not the case. We tried to get her to eat something. We took her out of the gymnasium and she calmed down somewhat in the car, but that first tantrum-like episode was just the beginning of what would become a frequent recurrence over the next nine months.
The episodes came in clusters of days to weeks. Symptoms ranged from mild irritability and agitation to panic attacks to moaning and grunting with limbs flailing. At times, the extreme behavior could last for less than half an hour. Other times, it could go on for hours at a time, ending only with the exhaustion of sleep. Her overall mood remained irritable, especially with her siblings and parents. She showed mental and emotional regression, such as playing with toddler and preschool-aged toys. She lost her initiative and desire to participate in activities, and she fatigued easily from her usual sports. She became unmistakably indecisive; even simple choices, like deciding between orange or cranberry juice, could bring on panic. As a gifted student, she showed no significant decline at school, but returned home exhausted, complained of body aches, and often desired to stay in bed.
Professionals Were Mystified
We wondered, was this merely a stage? The onset of puberty? The beginning of a mental illness? It was frightening and heartbreaking to watch her suffer. She could not be consoled by any of our interventions. She was unable to describe how she felt to me, her father, or her siblings, nor to the psychologist that we eventually took her to for help. The therapist tried cognitive behavioral therapy, talk therapy and play therapy, but was unable to make any progress over several months. With the psychologist’s help we tried “no-talk” therapy and other techniques recommended for children on the autistic spectrum. We were discouraged when the therapy seemed to trigger and even worsen her mental state. We tested for Lyme disease and other physiologic illnesses, and we even did a brain MRI, in fear of a tumor presenting itself with such dramatic behavioral change.
Thankfully, her psychologist reached out to her listserv of colleagues, anxious to find some help for our child. After receiving the response, “Have you considered PANDAS?” she passed the question along to me. I immediately began reading and researching to see just what this furry black and white bear might have to do with my suffering child. I will be forever grateful for that suggestion.
What Is PANDAS?
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) is a little-known cause of neuropsychiatric disturbance in children. In retrospect it was easy to diagnose: our child had had strep pharyngitis (strep throat) and was treated with antibiotics (azithromycin) ten days before that first episode at the wrestling match. Her sudden behavioral changes were due to an autoimmune reaction resulting in antibodies attacking the basal ganglia in her brain. This part of the brain is involved in emotional processing, motor expression and motivational planning.
The picture was clear but unfortunately I had been unaware of this condition’s existence, as were the two other family doctors who initially evaluated her. The diagnosis was later confirmed, first by her dramatic positive response to one month of antibiotics to treat strep, and then by the pediatric infectious disease specialist she eventually saw. Now, two months after beginning treatment, she continues penicillin daily to prevent further episodes of strep, which could trigger new psychiatric symptoms, but she has returned to herself: laughing, playing sports, and enjoying her life again. Her enthusiasm, initiative, and spontaneity are back!
Commonly Mistaken for Mental Illness
There has been controversy surrounding the PANDAS diagnosis since it was first defined by Susan Swedo, MD, at the NIMH in 1998. It seems this controversy is at least part of the reason why I and the other doctors were still ignorant of the condition more than 20 years later. It is thought to be a rare illness; however, I suspect that it is not actually that rare, just rarely diagnosed. When a child presents with a sudden onset of emotional or behavioral symptoms to their family doctor, they are frequently given a quick psychiatric diagnosis. A label of anxiety, ADHD, or obsessive-compulsive disorder is neatly applied, and then psychiatric drugs are prescribed to the child who is already emotionally disturbed. These labels describe the child’s symptoms, but they do not identify the cause of those symptoms. It would be like treating the vomiting of acute appendicitis with an anti-nausea pill rather than with the surgical operation required to remove the infected appendix. The child will continue to get sicker while the drug temporarily masks the symptoms.
Psychiatric Medications Add Confusion and Worsen Behavior
If the child is given selective serotonin reuptake inhibitors (SSRIs) to treat the OCD or anxiety, the drugs have their expected effects which frequently include hyperstimulation, anxiety and mania, and the child might become more aggressive, even violent. An organic illness is not taken into consideration and most often it is assumed that the child is getting worse, not that they are being negatively impacted by the medication’s expected effects.
If the child is given stimulants his behavior might shift from hyperactivity and agitation to apathy. Children given stimulants are frequently observed to lack spontaneity, pleasure, or curiosity. They are likely to experience any combination of the effects listed in the medication’s package insert: drowsiness, loss of appetite, lethargy, insomnia, facial tics, mood swings, or psychotic episodes. Soon, the already suffering child can have depression added to their diagnostic label. If he did not already meet all the criteria for PANDAS, which includes OCD, psychomotor tics, and anxiety, he certainly will with the addition of psychiatric drugs. Unfortunately, the root cause is missed as the child is drugged and his symptoms are worsening.
Look for the Root Cause, not a Psychiatric Label
A sea change is needed in the evaluation of children with perceived psychological disturbances. The widespread psychiatric diagnosing of children has led clinicians to underdiagnose physical disorders. Parents are told that their child has a fictitious biochemical imbalance in the brain while real medical disorders are overlooked. Each child with a new onset or sudden change of emotional or behavioral disruption needs to be evaluated for underlying infectious causes which could be leading to his suffering. This includes evaluation for a streptococcal infection, but also a long list of other pathogens such as Lyme, Bartonella, and Mycoplasma which are also known to cause PANS (Pediatric Acute Onset Neuropsychiatric Syndrome). Other etiologies of abrupt behavioral and emotional change must also be considered, including head injury, concussion, trauma, abuse, and exposure to toxins and drugs. Many prescription drugs, especially psychotropics, can induce disruptive cognitive and psychiatric symptoms.
Clinicians Need a New Awareness
We need to educate our doctors about this problem and identify these children early in their illness when it is the most responsive to treatment. Treatment for PANDAS includes appropriate antibiotics, cognitive behavioral therapy and in some severe cases immunologic therapy (such as steroids or intravenous immunoglobulin, IVIG). Certainly, let us stop labeling kids with psychiatric disorders and giving them lifelong diagnoses and brain-altering psychiatric drugs in the name of treatment. These suffering children and their families need appropriate care, effective treatment, and compassionate understanding.
The medical community has been slow to accept this infectious etiology of a neuropsychiatric disorder, but the researchers having been working hard and the evidence is clear. The newest guidelines from the National Institute of Mental Health confirm the realities of PANDAS/PANS. Now the word needs to be spread to doctors, counselors, teachers, and parents: If a child has a sudden and abrupt behavioral or emotional change, look for the root cause first. Treat the real disease and stop the suffering.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.