A large (n=130) open trial of long-term (2 years) medication for ADHD will soon be completed, looking at effectiveness in improving ADHD symptoms, functioning in school, family, with friends and in everyday activities, and quality of life.
OPHELIA (ON PANS: HOLISTIC EPIDEMIOLOGY, LONGITUDINAL IMMUNOTHERAPIES, ADDITIONAL TREATMENTS) PANS RESEARCH CLINIC is a scientific research project at Gillbergcentrum, Sahlgrenska Academy, funded by the Ophelia Foundation, The Swedish Child Neuropsychiatry Science Foundation, and Hjärnfonden (The Brain Foundation).
The project started in the autumn of 2020, and aims to increase knowledge about the symptoms, causes and treatment of acute neuropsychiatric disorders (PANS / PANDAS) that can occur mainly in children and adolescents. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) was described in the 1990s by researchers at the National Institute of Mental Health in the United States. A link had been observed between streptococcal infections and acute onset of obsessive-compulsive disorder and / or tics along with other neuropsychiatric symptoms. Later it was found that other infections (e.g., other bacteria and viruses) could also give similar symptoms and a group of researchers defined the diagnosis PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) in 2010. PANS is characterized by the child suddenly developing severe symptoms such as obsessive-compulsive disorder, eating disorder, separation anxiety, difficulty concentrating, tics and other involuntary movements, impaired motor skills, irritability / outbursts, urinary incontinence / enuresis, regression in development, hallucinations, and muscle and joint pain. The symptoms are thought to be caused by a neuroinflammatory reaction following an infection. Treatments that have been tried are antibiotics, anti-inflammatory treatment, immunomodulatory and psychiatric (psychopharmacological and psychological) treatment. The scientific basis is still insufficient and there is a great need for research on causes, diagnostics and treatment. PANS / PANDAS are diagnoses of exclusion, i.e., all other known medical, neurological and child psychiatric conditions must have been investigated / assessed / excluded.
Study participants are accepted for assessment at the Gillberg Neuropsychiatry Centre upon referral. Child psychiatric and pediatric / neurological assessment / investigation of other possible diseases / conditions should have been made and described in the referral. After consultation within our research team, one or more visits are offered for assessment with us. The project includes a treatment study with intravenous immunoglobulin (IVIG). In the study, some 10 children / adolescents will be given treatment with IVIG once a month for 6 months. If you wish to participate in the treatment study and you meet inclusion criteria for participation, evaluations are made by a doctor, psychologist, physiotherapist and research nurse on an ongoing basis during the study, with e.g., assessment forms, psychologist tests, motor tests, blood tests and possibly magnetic camera examination. The study has been planned in collaboration with the Pediatric Examination Unit (PCRC), Sahlgrenska University Hospital, and is carried out in collaboration with the Emergency Physicians in Gothenburg and VO Image and function, Skåne University Hospital, Lund.