Pandas, the disease that suddenly changes a child’s behavior, Lifestyle News

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On a family trip to Singapore in October 2018, Katy and Ben Chandler witnessed an astonishing change in the behavior of their eight-year-old son, Sam.

Katy had watched over Sam and his younger siblings at the hotel pool when he underwent a sudden transformation and became an unmanageable and defiant child.

“He was normally a nice, gentle boy,” his mother recalls. Unable to control Sam, she called her husband to help her.

Some time later, she will remember that Sam had also developed a facial tic – a sign of a little-known disease called strep pediatric autoimmune neuropsychiatric disorder, or pandas. Sam would not be formally diagnosed with the condition for almost two years.

Upon their return to Hong Kong, they took Sam to see a psychologist. Her behavior improved for a short time and they thought the therapy was working.

Sam developed a strep infection while traveling to Japan over Christmas – and his symptoms returned. He became rigid, refusing to eat certain foods – and he was very emotional and aggressive, picking on and throwing things.

After the holidays, her stress and anxiety levels remained high and every day became a battle to get her to go to school. He had trouble concentrating and his handwriting became illegible, his parents recalled.

“It’s scary to see the happy, outgoing child you knew being cruelly taken away,” Katy says, recounting how Sam no longer wanted to attend school activities or participate in events.

He developed separation anxiety, which made it difficult for Katy to let him go about daily chores, work, or exercise.

Obsessive Compulsive Disorder (OCD) has set in. During the pandemic, he went through a period in which he felt pressured to cook every day. He also went through a phase of craving for sugar, during which he ate spoonfuls of it from bags he had hidden in his room.

“When we took him away, he was knocking on the neighbor’s door to borrow sugar, or stealing money and sneaking into stores,” Katy said. After one episode, Sam was still remorseful and sad for his behavior.

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“Sam would steal our credit card and spend a lot of money,” said his father, Ben. He once took all the Japanese yen in the house, converted them to Hong Kong dollars, and bought himself Apple’s latest iPhone. “When we asked him ‘Why did you do this?’ he would just say it was to get revenge on us.

“When [an episode] happens I am aware of what is happening, but I feel like I can’t control what I’m doing; it’s like being a puppet and someone else is controlling [me]Sam said. “I knew it was wrong, but I couldn’t help but do it.”

Katy and Ben had sought help for Sam from doctors, therapists and psychiatrists in Hong Kong, the UK and Australia. Finally, a Hong Kong-based family doctor came up with the idea of ​​having a blood test that would help put a name on Sam’s condition.

According to the United States National Institute of Mental Health (NIMH), a child can be diagnosed with pandas when an obsessive-compulsive disorder or a nervous tic disorder, or both, suddenly appears as a result of a strep infection such as strep throat or scarlet fever, or symptoms of an obsessive-compulsive disorder or tic the symptoms suddenly worsen as a result of a strep infection. This is why pandas are often confused with a psychological state rather than a physiological one.

“Symptoms are usually dramatic, occur ‘overnight and out of the blue,’ and may include motor or vocal tics or both and obsessions, compulsions, or both. In addition to these symptoms, children can become moody or irritable, have anxiety attacks or worry about separating from their parents or loved ones, ”explains the NIMH.

The California-based US nonprofit Pandas Network estimates that one in 200 children worldwide has pandas or a related disease, Pans – acute onset neuropsychiatric syndrome in children.

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When a child’s symptoms are clearly linked to a strep infection, it’s called Pandas, a subset of Pans, the name used when a different trigger causes illness – these can include other bacterial irritants. , viral or environmental.

A child’s immune system can misdirect its response, causing inflammation in the brain and causing unexpected behavior. Symptoms can vary, but the onset is sudden and dramatic.

Symptoms may improve and then reappear in an even more serious form for even longer. If the disease is diagnosed and treated quickly and thoroughly, the symptoms can be eradicated.

Treatment is appropriate for each child, but generally requires anti-inflammatory drugs and other drugs for the immune system and symptom relief.

Sam now has cognitive behavioral therapy which helps him learn to identify and overcome destructive thought patterns. This therapy costs around HK $ 1,800 (S $ 316.29) per week, which is partially covered by the family’s health insurance.

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He takes medication for his anxiety and OCD, another for Attention Deficit Hyperactivity Disorder, and an anti-inflammatory drug for flare-ups. Another drug protects his gut from the build-up of acid which is a side effect of the anti-inflammatory drug. Daily vitamin supplements protect her immune system. The drugs cost around HK $ 3,800 per month; its probiotics and supplements cost around HK $ 2,200 per month.

Sam’s treatment, Ben says, is “like trying to build a puzzle out of a maze you’ve never seen.”

After a two-year absence from class due to anxiety, stress and difficulty concentrating, Sam hopes to start at Harbor School in Ap Lei Chau in the New Year.

He’s already working with the school’s partner, The Children’s Institute of Hong Kong, who will provide a dedicated supportive teacher when he joins regular classes – another cost to beating the disease.

“I’m nervous about going back to school because I’m afraid of being too stressed and dealing with my anxiety,” Sam says. He wants to go to university in the future, to become a marine biologist. or neurosurgeon.

To publicize the Pandas, Sam let his hair grow for three years. In October, he razed it to raise funds for the American nonprofit Neuroimmune Foundation, based in Wisconsin. This group aims to educate parents, doctors and health workers to help them identify and treat this disease more quickly.

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Sam’s parents say a lack of awareness of pandas in schools and among healthcare professionals means many children are not being treated as well as they could be.

Overall, the family raised US $ 68,401, exceeding their initial goal of US $ 50,000.

In 1998, Susan Swedo, then a pediatrician at the National Institutes of Health in the United States, first proposed Pandas to explain an apparent association between strep throat, OCD, and tics. For more than 20 years, many experts have disputed the diagnostic criteria, the proposed treatment and some even doubt the existence of the disease.

A 2019 report in the journal Paediatrics & Child Health noted: “Given the severe and debilitating nature of the symptoms and the clear effects on family and child functioning, the identification of effective therapies based on evidence and understanding of the incidence, prevalence and biological basis of this syndrome [Pandas] are necessary.”

The World Health Organization has just included pandas in its International Classification of Diseases – a step that will certainly help spur needed research.

READ ALSO: How the pandemic brought Asian children to a breaking point

This article first appeared in South China Morning Post.

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