In November 2021 my beautiful, caring and confident daughter Rose began her fight against a relatively unknown condition called PANDAS.  She went to school one morning her usual happy self but came back a very different child! That same evening she was suffering with some very serious neuro-psychiatric symptoms, screaming in desperation for help with what we now know as intrusive thoughts.  A phrase used by others is its like your brain is on fire and in Rose's case this was triggered by a Streptococcus throat infection one week prior. She also presented with fine motor skill problems, concentration issues, severe anxiety, hyperactivity and sleep problems. Over the space of a day Rose's personality altered beyond recognition. 

PANS and PANDAS are conditions causing inflammation in the brain resulting in neuro-psychiatric symptoms such as OCD, tics, intrusive thoughts, anxiety and reduced fine motor skills along with many more. More commonly affecting children, these conditions can be isolating and life changing if not recognised and treated early.

Our own personal journey uncovered multiple stumbling blocks with diagnosis and treatments largely stemming from a lack of knowledge, understanding,  research and treatment direction with the medical professionals we came across.  With both PANS and PANDAS, the key to the best recovery for our children is early diagnosis and antibiotic treatment to treat the initial infection however beyond this point is where the research is lacking and medical professionals are left with no agreed direction for treatment plans.  A locum GP took Rose's case by chance and along with ourselves we reviewed the supporting documentation provided by the charity and set a treatment plan inplace.

Rose I'm thankful to say after a long course of antibiotics is stable with low level OCD traits such as intrusive thoughts.  She will run the risk of flare ups with further infections but we hope that with therapy, time and support she will find her confident happy self once more.

PANS PANDAS UK's mission is to ensure speedy diagnosis and effective treatment for sufferers by educating the medical community as well as offering support to sufferers and their families.

For more information please see their website www.panspandas.org.uk