PANDAS/PANS: Experiences from a 7-year-old PANS patient and his mother

PANDAS/PANS is a ‘journey’ for the child and their family

*Names have been changed to uphold patient confidentiality.

Henry, aged 7, lives in Hong Kong. Like many children, Henry enjoys the outdoors and playing with other children. His mother, Tina, describes him as a deep thinker by nature and that he has always been a bit sensitive and anxious. His personality and behaviour never appeared to be a cause for concern.

“But then this sudden [PANS] onset came out of the blue, and it became a new challenge for us all that we weren’t prepared for,” says Tina.

Unbeknownst to Henry, Tina, and the rest of their family, Henry was experiencing PANS, or Paediatric Acute-onset Neuropsychiatric Syndrome.

PANS is an umbrella term defining a severe onset of unexplainable symptoms of OCD and/or tics in response to any infection. PANDAS, or Paediatric Autoimmune Neuropsychiatric Disorder, associated with Streptococcal infections, is triggered by a misdirected immune response resulting in inflammation of the brain. PANDAS/PANS are disorders that may develop in children typically between the ages of 3 and 15 years old and can potentially become chronic conditions into adulthood. The disorders are largely overlooked by healthcare providers, partly because of the assumption that there is not an underlying medical cause for the child’s psychiatric symptoms and that there is currently no definitive diagnostic test. PANDAS/PANS are clinical diagnoses based on a collection of signs, symptoms, medical history, and laboratory findings that cannot be explained by any other neurological or medical disorders.

For children like Henry, the experience of living with PANDAS/PANS can oftentimes be confusing. Tina says understanding and addressing Henry’s needs has been a “real journey” for her and the family, and that she knows of other families in Hong Kong who have had similar experiences. By sharing her son’s PANS story, Tina hopes that it may resonate with other families who are going through the same worry and confusion for their child.

How it began: sudden bed-wetting, tics, and mood swings

In September 2019, Henry started Year 1 in the ESF international school system. It was an exciting yet challenging time for him. Then, only a few months into the school year, the COVID-19 pandemic hit, meaning that Henry had to switch to remote home learning. Like many families, the transition into online home learning was challenging at first.
Flash-forward a year later to August 2020 when Henry’s behaviour suddenly changed: he developed tics, expressed oppositional behaviour to others, and had intense mood swings. Tina says Henry’s change in mood seemed like “manic behaviour and stress episodes.”

“Henry was also more OCD-like. For instance, he would frequently be so uncomfortable with the clothes he was wearing for an inexplicable reason, to the point where he wouldn’t stop changing his shirt. As his mother, it was very concerning to see this new behaviour come out of nowhere,” says Tina.

Henry then started spontaneously wetting himself at 6 years old, after years of being toilet trained. So, Tina sought out support – after a visit to the GP and paediatrician, the paediatrician asked if Henry had been assessed for ADHD. Tina was open to having Henry assessed, but she said that an ADHD diagnosis still would not be able to explain the sudden onset of his new symptoms, including tics, OCD, and spontaneous urination. Additionally, it was difficult to discern whether Henry had ADHD or, like many other people around the world, was dealing with COVID-19 related stress.

Managing home learning suddenly had a different feeling for Tina, who was now not only trying to keep her children on top of their schoolwork but was also managing Henry’s care plan. While home learning meant more to manage at home, Tina was also relieved to a certain degree. By staying home, Henry would not have to worry about potentially feeling embarrassed if he suddenly wetted himself at school. Still, Tina was also stressed about going out of the house for any reason, even for groceries, fearing that Henry could have a sudden accident at any time, anywhere.

Henry and his family have juggled the challenges of his PANS experience, but Henry’s story is also a positive one – he has been on a tailored care plan since June 2021 that has shown to be a beneficial experience for both Henry and his family. By sharing their story here - including their journey pinpointing a PANS diagnosis and finding the right treatment plan – Henry and his family hopes that other families who may be going through same experience will know that they are not alone.

Henry’s treatment plan

After months of not fully understanding what was going on, Henry received his PANS diagnosis at OT&P in June 2021. Henry’s care team carefully tailored his care plan based on the latest evidence-based knowledge and research on PANDAS/PANS.

Between five to six weeks after Henry started his treatment plan, Tina saw a positive change in Henry. Here’s what his treatment plan looks like:

Parent-Child Interaction Therapy (PCIT)

PCIT is a type of behavioural intervention that focuses on reducing specific external behaviours that may be problematic (e.g. aggression) and increasing a child’s social skills. PCIT also places a strong emphasis on improving parent-child communication.

PCIT was one of the first interventions that Henry started in his care plan. Tina says the PCIT sessions, which Henry attended over the course of 3-4 months, were a very positive experience. In each session, Henry would work on positive communication such as praising others, mirroring others’ positive social behaviours, and speaking positively with his parents. Tina highly recommends PCIT “for any family having communication challenges, whether PANS is involved or not, and even if you just want to establish healthier communication with your child. After we finished PCIT for Henry in March 2021, I continue to feel empowered to keep communicating with Henry using the skills and tips that I learned through the sessions.”

Medication

The type of medication given to treat PANDAS/PANS may vary. A course of antibiotics or anti-inflammatories may be prescribed, which is just one part of a child’s carefully carved care plan.

External support from the community

After Henry was assessed for ADHD, Tina kept his school in the loop and mentioned that Henry may need additional support with schoolwork. The school was very compassionate and provided that support, such as setting up “social thinking groups” where Henry could practice socialising with other children, and when in-person classes began again, teachers offered Henry fidget toys to help him focus during lessons.

Tina and other family members are also part of a PANS support group in Hong Kong, which she says “feels like an emotional support group.” The group is a community support group of those who have family members with PANDAS/PANS and are navigating this unique journey together.

A holistic approach to nutrition and mental well-being

One technique Henry has learned is to focus on his breathing when he is feeling angry. This is part of a holistic approach that includes focusing on good mental health. In addition, Tina continues to monitor Henry’s diet more closely, making sure that he is eating nutritious meals throughout the day. The combination of practising good mental health and nutrition contributes to improving Henry’s health and well-being overall.

Today, Henry is doing very well

Being the deep thinker that Henry is, he is also a very self-aware child. Through PCIT, Tina spoke openly with Henry about his PANS diagnosis in order to encourage Henry to feel more comfortable with talking candidly about his feelings. One time, when Henry was having a bad day, he looked at Tina with a remorseful face and said, “I don’t want to be mad all the time. I don’t want to be bad.”

Henry still has his fair share of good and bad days, but he’s progressed tremendously since early 2020. Most recently, Henry has discovered a love for surfing and goes out to catch a wave or two along the Hong Kong beaches whenever he can.

Tina’s tips

Finally, Tina has a few key points that she would like other parents to know if their child is having sudden tics, OCD, and/or other odd behaviours that their child did not display before:

• Parents: trust your instincts. The symptoms of PANDAS/PANS may be subtle. It’s helpful to be aware of what those symptoms may be in case they appear out of nowhere. The sudden onset of symptoms is the key with PANDAS/PANS. Whether your child already has specific behavioural sensitivities or not, if you see the symptoms start suddenly and they don’t seem like your child’s normal behaviours, see a doctor.
• Framing PANDAS/PANS as a way to rule out the cause of your child’s sudden change in behaviour is transformative. The diagnosis was better than being confused and stressed for months about what was happening.
• Early diagnosis is important. If a child waits until their teenage years to be diagnosed, the intrusive thoughts children with PANDAS/PANS experience can become even more intense in combination with natural hormonal changes they’re going through at that period of life.
• And for the healthcare community: greater awareness of PANDAS/PANS is needed. Interestingly, many in the medical community not only in Hong Kong but around the world are still unfamiliar with PANDAS/PANS. A GP may be the first point of contact for parents when looking for answers if their child has a sudden onset of tics or rage fits. If practitioners are also more aware of PANDAS/PANS and may at least identify a potential diagnosis from the get-go, this can drastically help relinquish a lot of anxiety for families.

For more information on PANDAS/PANS, visit The PANDAS Network.

Help at OT&P

At OT&P Healthcare, we have a dedicated team of healthcare professionals who can help you understand these symptoms and recommend a suitable treatment for this disorder. Our child psychologists and functional medicine doctors are knowledgeable to answer any questions you might have.

Call our functional medicine team member, Jenny Wang, to find out more at 2180 2713. You can also email us here.