Physicians treating the rare disorders PANDAS/PANS met yesterday in London to discuss ways forward in treatment solutions for children affected by this previously unknown condition. It seems that an autoimmune response to the antibodies of these agents affects the brain causing symptoms such as obsessive-compulsive disorder, behavioral changes, rage, anorexia, bed wetting and a loss of handwriting skills. This is terrifying for both the child and their families and warrants immediate medical intervention.
PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. PANS is a newer term which recognises the larger class of acute-onset OCD cases, Paediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD following infection, not just those associated with streptococcal infections.
Treatment options vary and may include a simple course of antibiotics to more extensive immune modulators that try to reset the immune system.
The onset of PANDAS/PANS can be so sudden that children are often reported to literally change overnight. Often when parents go to their GP, the GP has never come across anything like this before so gaining quick access to medical professionals who can help with this condition is critical.
Dr. Tim Ubhi, Paediatrician at the Children’s E-Hospital and Dr. Ming Lim, Paediatric Neurologist at Guys & St Thomas’s are two of the doctors leading the way in setting up a paediatric network to benefit other physicians. This will enable other doctors to learn more about this condition and ultimately get faster treatment for their children, he says…… ‘It’s great to see this landmark meeting happening today in London. Many doctors are seeing patients like this and require guidelines as to the best clinical treatment protocols available.’ Dr. Lim is seeing many such cases in his clinics and wants there to be access to similar services throughout the NHS in the UK.
Parents were instrumental in bringing today’s gathering to fruition. First-hand experience of the severity with which this condition can strike has driven forward family voices over the need for change. It’s hoped the children of the future will access speedier treatment going forward.
Contact: Dr. Tim Ubhi at The Children’s E-Hospital on 07967 822808 or firstname.lastname@example.org
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Rare Revolution Editor