In the photo of the Gilson family, made up of Neil, Lucie and their 3 children, there is nothing to indicate that Jack, their 10-year-old boy, was able to weather storms for months. However, the child has long been perceived as suffering from autistic disorders because of his behavior. An idea that exploded in flight thanks to a single doctor.
His personality changes completely
It all starts at just 18 months. The young boy suffers from angina. A banal affection which nevertheless seals a starting point. Jack suddenly goes from a playful little boy to an anxious child with increasingly aggressive behavior. According to the testimony of his parents Daily Mailthe child starts screaming at nothing, bites, refuses to eat and has OCD, such as an aversion to the straps of his stroller.
“Some days he would get really angry, then suddenly stop and stare into space,” explains his father.
Neil and Lucie, worried about this change of heart, end up consulting several pediatricians. It is then suggested to them that Jack could be autistic. A diagnosis which nevertheless leaves parents with persistent doubt: “The fact that he was fine one day and completely different the next seemed strange to us.”
A TV show that evokes another possibility
But when she was 3 years old, while Lucie was interested in autism spectrum disorders and desperately looking for answers, she came across a television program telling the story of a child with symptoms almost identical to those of Jack.
On set, Dr Tim Ubhi, British pediatrician, discusses two syndromes that are still largely unknown: PANS and PANDAS. Two pediatric neuropsychiatric disorders that can cause the sudden appearance of tics, OCD, eating disorders or even aggressive behavior after a trivial infection.
“Watching this show was a real revelation”says the mother.
PANS and PANDAS: when an infection disrupts the brain
PANS (pediatric acute-onset neuropsychiatric syndrome) and PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) are both triggered by common, everyday infections.
In the case of PANDAS, the trigger is generally a group A streptococcal infection, responsible in particular for tonsillitis or scarlet fever. PANS can be caused by other viral or bacterial infections, such as the flu, Covid-19, gastroenteritis, or even certain environmental factors.
But in some children, the immune system “goes into overdrive”.
“The immune system seems to trigger an exaggerated reaction, attacking the brain instead of limiting its activity to the initial microbe”explains Professor Rajat Gupta, pediatric neurologist at Birmingham Children’s Hospital to the Daily Mail.
This inflammatory reaction then disrupts certain brain areas involved in emotions, behavior, movements and sensory perceptions.
Symptoms that resemble psychiatric disorders
The syndrome is still very poorly understood, including among health professionals. Result: many children are first referred for psychiatric or neurodevelopmental diagnoses.
“Often, the child is considered to have bad behavior”regret the specialists.
The symptoms can, however, be very impressive: sudden onset of OCD, tics, extreme anxiety, anger attacks, sleep disorders, dietary restrictions or sensory hypersensitivities.
“This inflammation particularly affects the basal ganglia, brain structures involved in the control of emotions, movements and behavior”specifies Dr Joachim Mullner, psychiatrist interviewed by True Medical.
Because of this neurological damage, some children become unable to tolerate certain clothes, refuse to eat certain foods or develop very pervasive obsessive behaviors.
A treatment that gives them back their son
After the show, Jack’s parents luckily also get an appointment with Dr. Tim Ubhi, one of the British PANS-PANDAS specialists.
Lucie’s intuition was correct: a blood test then revealed a still active streptococcal A infection. The verdict is in: Jack does indeed suffer from PANDAS syndrome.
Treatment is started immediately: antibiotics to eliminate the infection, combined with anti-inflammatories intended to calm brain inflammation.
And the results are almost immediate. “We started to find our son”his father says today.
Urgent care
For Joachim Mullner, quickly recognizing this syndrome is essential in order to avoid a worsening of symptoms.
The diagnosis is generally based on several tests:
- A thorough neurological and psychiatric evaluation;
- Blood tests looking for recent infection;
- Sometimes a brain MRI;
- Or an electroencephalogram (EEG).
Treatment then depends on the cause identified. It can combine antibiotics, anti-inflammatories, psychological care and, in certain more severe cases, immunotherapy.
A probably underdiagnosed syndrome
There are currently no official statistics in the UK or France regarding the number of children affected. But some U.S. estimates suggest that about one in 200 children could be affected.
The problem: many still fall through the cracks. As the symptoms resemble those of classic psychiatric disorders, some children are wrongly referred to child psychiatry services. Others even see their parents questioned.
“In the most extreme cases, some parents are accused of exaggerating or provoking the symptoms,” underlines Professor Gupta.
For specialists, better knowledge of the PANS-PANDAS syndrome has therefore become essential. Because behind certain behaviors deemed “incomprehensible” in children can sometimes be hidden… a potentially reversible inflammatory brain disease.