This is Ava and she has been diagnosed with PANDAS. It happened to her; we didn’t see it coming and it can happen to anyone. In fact, it is happening to thousands of children across the UK and the rest of the world. My son, Ben (17), and I are joining the PANS PANDAS UK community this July and running the Ilkley Half Marathon 2024 to raise awareness of PANS and PANDAS, and support children and families affected by this life-changing condition. I share our journey in the hope we might help other children and their families.

Ava was a healthy, outgoing and confident 7-year old girl until a Strep A infection completely changed her life. In June 2023, she suddenly stopped eating and drinking. As parents, we had no idea what was wrong or how to help her and nor did several medical professionals: the GP felt it was behavioural, A&E turned us away even though she refused to drink there too, and Leeds General Infirmary did not accept the GP’s referral, suggesting we contact an anorexia helpline instead. Overnight, she developed panic attacks (during which she becomes tachycardic), OCD, extreme separation anxiety, depression (she said she did not want to wake up in the morning), joint pain, difficulties with coordination and balance, regression in her speech (she still cannot say certain sounds), disturbed sleep, hyperactivity and insomnia. She barely attended school.

Fortunately for Ava, my good friend had heard about PANS/PANDAS. Three months later, after yet more futile visits to the GP and private consultants, several privately administered and self-funded tests (cranial MRI, EEG, ECG, and several blood panels in London) and finally, a breakthrough consultation with a leading expert paediatrician in the condition, Ava received a diagnosis of PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). What happens is that Strep A damages the immune system so that instead of tackling the infection, the antibodies to strep attack the basal ganglia cells of the brain, the part that controls behaviour, emotions and movement.

Six months of antibiotics and other treatments have helped Ava regain some quality of life - but we have had to fight for this: PANS/PANDAS is not yet recognised by the NHS (clinical guidelines are being written over the next twelve months) yet it is an internationally recognised autoimmune disease. Ava’s condition is not curable, but with ongoing treatment and management, the hope is that, as her immune system matures, her symptoms will improve in adulthood.

Every day is still a challenge for Ava. She cannot always attend school. Yet we know that Ava is one of the lucky ones. Not all children and families know about PANS/PANDAS nor are they able to access adequate treatment or support. The future for these children - left untreated - is bleak: not only are they unable to access education, but PANS/PANDAS can lead to long-term damage into adulthood.

Ben and I are taking on this challenge with the hope that we might raise greater awareness in the teaching profession, the medical profession and for the general public. Diagnosis is key and a simple course of antibiotics can make a huge difference.

PANS PANDAS UK are the only UK charity created to educate the medical community and general public about these conditions with a view to ensuring better diagnosis and early effective treatment for those affected with these little recognised but life changing conditions.

Please support if you can, if only by sharing this post.

Thank you!

Jo and Ben xx