MY KID ISN’T CRAZY
Rare and devastating children’s illness is a matter of mind and body
Four years ago, Caleb Fournel had strep throat and was treated with antibiotics for 10 days. His parents, Susie Wiggins-Fournel and Martin Fournel, thought that was the end of it.
But a common childhood infection was the beginning of a nightmare that lasted more than two years. The infection apparently cleared up, but five-year-old Caleb started behaving in ways that alarmed his parents. He said his clothes irritated his skin and he refused to wear them. Before the infection, Caleb had roamed the family’s rambling property near Wakefield with his older sisters and loved working with horses. After, he became fearful and depressed and didn’t want to do things with his friends.
Eventually, he started having hallucinations, claiming there were sharks in the swimming pool and spiders in the house. He complained of what he called “eargrains” — migraines in his ears.
He lost the ability to understand French, and would speak gibberish he claimed was Chinese. When he drew pictures, it was scrawled images of headless boys.
“Caleb said many times ‘You don’t understand my mind,’ and ‘It would be better if I wasn’t here. All the pain would stop,’ ” Susie says.
Most horrifying to his parents, Caleb told them wanted to die. He spoke of slipping under the water when he took a bath. They kept the door open.
Caleb’s behaviour was so bizarre that the family hid it for two years. “I really thought I did something wrong,” says Susie.
In the next few years, Caleb was treated for strep several times with antibiotics. The strange phobias and obsessions would diminish or disappear, then return.
A DIAGNOSIS
The Fournels didn’t connect strep or antibiotics to their son’s worrisome behaviour. Then they saw a television program about a family from Chatham, Ont., who had a child with similar symptoms and a diagnosis of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, known as PANDAS.
For Caleb’s parents, it was like a light bulb switched on.
“It was exactly what they were talking about. That’s what we were living,” Susie says.
PANDAS is a rare and mysterious illness, affecting only children between the ages of three and puberty, according to the U.S. National Institute of Mental Health. It is believed the strep bacteria hides in its human host through a process called “molecular mimicry.” Eventually, the host’s immune system recognizes the impostor and produces antibodies to attack, but they may also attack the body’s own tissues, sometimes targeting the brain.
PANDAS appears virtually overnight following a strep infection. Symptoms include obsessive compulsive disorder (OCD) or a tic disorder, but may also include hyperactivity or mood changes and difficulty sleeping.
Often, drawing or handwriting ability changes for the worse. The symptoms are also “episodic” — they can get worse, then there is a slow improvement. If there is another strep infection, the symptoms get worse again.
It’s unclear how many children might have it, although the U.S.based PANDAS Network says a “conservative” estimate is one in 200. The network believes there is a link between PANDAS and a significant minority of pediatric OCD and tic disorders, such as Tourette Syndrome.
PANDAS is recognized by numerous researchers and medical people, but it is not specifically listed in the International Classification of Diseases, the World Health Organization’s standard diagnostic tool, says microbiologist Jason Tetro, a visiting scientist at the University of Guelph and the author of The Germ Code and the Germ Files.
It’s a psychiatric condition that may have a microbiological cause. That’s not as strange as it might sound — for example, toxoplasmosis, a disease caused by the common parasite toxoplasma T. gondi, has been associated with schizophrenia and bipolar disorder in rare cases, Tetro says.
PANDAS manifests itself in disturbing ways. In 2007, the Journal of the Canadian Academy of Child and Adolescent Psychiatry documented the case of eight-year-old boy with PANDAS-related OCD who also had an eating disorder after becoming obsessed with reading labels and avoiding certain foods. After he was hospitalized, he believed nurses were trying to poison or contaminate him. He had a number of rituals around eating, including nodding his head, flapping his arms and tapping his mouth before he could take a bite of food. He claimed intrusive images prevented him from doing “just about everything.”
But the U.S. mental health institute also says a child who has OCD or tics and has had a strep infection doesn’t necessarily have PANDAS. Many children have OCD or tics, and children are often exposed to strep several times a year.
CONTROVERSIAL TREATMENT
While a single course of antibiotics will usually take care of both the strep infection and the symptoms, strep infections can hide in the sinuses and parts of the body, making them harder to detect and eradicate. Physicians often recommend a number of measures to treat the PANDAS symptoms, including cognitive behavioural therapy and selective serotonin reuptake inhibitor medication.
But long-term antibiotic use, preferred by some PANDAS parents, is controversial. At the NIMH, researchers are looking at using antibiotics as a preventative measure. But right now, the agency warns there’s not enough evidence to recommend it.
The Canadian Family Physician, the official journal of the College of Family Physicians of Canada, also did not recommend long-term antibiotic use in a 2012 article. “Whether PANDAS is a unique clinical entity continues to be questioned. As a result of the high incidence of GABHS (strep) infections in the pediatric population, the relationship between PANDAS and GABHS infections might be purely coincidental,” said the journal.
The problem when it comes to treating PANDAS is that there is still debate about the cause, says Tetro. The big question is whether PANDAS is the result of repeated exposure to infections, if it is the same infection that keeps resurfacing, or if it’s a classic case of autoimmunity.
“There is still a lot to be learned about PANDAS in terms of how it works inside the body,” says Tetro. “Each case could be different.”
PANDAS can be caused by a succession of infections or “repeated exposure” — it has been estimated that the average elementary school student experiences contact with this bacterium several times a year. This is why long-term antibiotic treatments may work, because they eradicate each infection as it comes along, Tetro says.
Some physicians also prescribe antibiotics as a preventative measure. But many also hesitate to prescribe antibiotics because of concerns about resistance. PANDAS may also be worsened by a persistent bacterial infection that remains in the body at low levels, he says.
“Literally, it gets into an immune cell and hides.”
Antibiotics may help or may have no effect at all. This is why some doctors prefer to treat it with selective serotonin reuptake inhibitor medication.
“I think the reason there’s no consensus comes down to the cause,” Tetro says. “Until we can identify and diagnose the mechanism, there will be disagreement. Only when you have that, can you develop a medical course of action. Regulated health professionals have to be absolutely sure of what they’re looking for.”
The long-term solution would be an algorithm for testing to figure out the mechanism so doctors can know which treatment would be more effective, says Tetro. But that algorithm would have to be designed and tested. There are no quick solutions to the problem.
Caleb saw a number of specialists, including a neurologist and a psychologist. They all acknowledged PANDAS, but declined to treat it with antibiotics, says Susie. The Fournels could only find two doctors who treated PANDAS with long-term antibiotics in Canada — one in Saskatchewan and another in Chatham in southern Ontario.
Caleb was put on a waiting list to see the physician in Chatham. It took two years and it’s a ninehour trip each way. Caleb started treatment with antibiotics in July 2015.
Within three days, he was headed back to being the boy he had been before, Susie says.
Caleb has been taking small doses of antibiotics for a year and a half and will likely continue taking small doses for at least another two years. The Fournels have some concerns about that, but it has been overridden by Caleb’s return to normalcy. Now, at 9 ½ years old, he is almost back to being his normal self. When he draws, it’s dirt bikes, dogs, horses, policemen like his father.
The change in behaviour after Caleb started the antibiotic treatment is too much of a coincidence, Martin says. He sometimes has minor relapses, but never to the depths of his previous behaviour. “It’s like night and day. We can live with this.”
Susie says Caleb would not be the same without antibiotics.
“We’re not doctors. But we can’t say this treatment isn’t working,” she says. “It’s like he’s alive again.”