Charlotte Higgins: Raising Awareness of PANS and PANDAS
PANS and PANDAS are conditions that affect the brain. Children and adolescents with PANS or PANDAS experience a variety of symptoms ranging from mental health symptoms to changes in behaviour and difficulties with movement.
FREQUENTLY ASKED QUESTIONS PANS AND PANDAS
"Hi, I’m Charlotte, mum of three incredible humans, and in December 2020, our then 7-year-old son’s world collapsed as symptoms took hold. You won’t ever see his photo or know his name, as I want to protect his dignity, but you will hear me shouting about Pans/Pandas and raising awareness.
To see your clever, gifted, generous, funny, and loving little boy be destroyed to the point he can no longer leave the house or attend school has broken our hearts.
It’s a condition that’s treatable, but the sooner it’s spotted, the better the outcome, and sadly, it’s very scarcely known about within education and medical practice.
It can be caused by: Strep infection (strep throat, scarlet fever), COVID-19, Chickenpox, common bacterial/viral infections and children nearly always bounce back from these.
The symptoms from Pans or Pandas can come on overnight, where parents report their child waking up a different person, but there may also be subtle changes over a longer period.
Timeline of Our Son's Symptoms to PANS Diagnosis
Initial Symptoms - December 2020:
- Experienced the first panic attack.
- Significant anxiety over choices and changes, leading to screaming for several hours.
- Symptoms included restricted eating, decreased social interaction, and school attendance issues.
Progression - 2021 to January 2024:
- Symptoms ebbed and flowed; continued struggles with anxiety.
- Received ASD diagnosis.
- Attended psychologists for support with anxiety.
Crisis Point - February 2024:
- Suffered from a complete shutdown, with hours of screaming.
- Required an ambulance due to food and fluid restriction.
- Exhibited no self-care or outside interaction, struggling with basic tasks like climbing stairs, brushing teeth, and changing clothes due to distress.
Medical Assessment - February 2024:
- Referred to NHS pediatrician for assessment.
- Diagnosed with ASD burnout.
Seeking Further Testing - August 2024:
- Requested testing for PANS/PANDAS.
- Blood tests conducted; ASOT negative for strep—NHS MRI referral made.
Private Treatment and Diagnosis
- September 2024: Consulted a private immunologist; treatment started.
- December 2024: Significant improvement observed. Diagnosed with PANS.
Recent Developments - February 2025:
- Noted a history of relapsing and remitting symptoms; previous undiagnosed PANS/PANDAS likely throughout this time.
- Infected finger two weeks prior to the latest flare may have triggered an immune system explosion, exacerbating PANS.
Treatment Response - February 2025:
- After our weeks of medication, noticeable improvements began, including:
- Reduced rage
- Quicker recovery from panic attacks
- Some OCD symptoms persist but are being addressed with a paediatrician.
- Engaging more with family, improving social interaction, and better eating habits.
My Mission
It’s my mission for any school-based practitioners to be made aware of the signs and symptoms of Pans or Pandas, so it can be ruled out or treated as quickly as possible.
No one should have to suffer as my son has or still is, and the implications are far-reaching.
DOWNLOAD PDF poster for schools here
Please signpost your Special Educational Needs Coordinator (SENCO) to the website www.panspandasuk.org for the registered charity that works tirelessly for our children.
Below is a video explaining what to look for:
#panspandas #panspandasawareness #panspandaswarriors #panspandasuk #isitpanspandas #senco
