(UK) NHS fails to recognize children affected by pandas; 'thousands' "misdiagnosed"

Sept 6, 2019, (UK) iNews: Parents say their children are suffering from a little-known condition called PANDAS – but they can’t get treatment from the NHS https://inews.co.uk/news/real-life/pandas-pans-strep-throat-illness-infection-change-child-personality-nhs-treatment/ One moment William Hewlett was an easy-going boy, or a “bundle of joy” as his mum described him. Then virtually overnight he began violently lashing out at his parents and sister. He was also hallucinating, saying he could see everything “dripping in blood”. Most disturbingly, he tried to take his life three times – by jumping out of windows and running into moving traffic. He was just seven-years-old. The youngster, now nine, has been diagnosed with pediatric autoimmune neuropsychiatric disorder (Pandas) which is associated with streptococcal infections. It is an infection-induced condition that disrupts a child’s normal neurological functioning, leading to compulsive or Tourette’s-like behaviour. Doctors aren’t sure why normal childhood illnesses such as strep throat, chicken pox or scarlet fever in some children can trigger sudden onset of strange behaviour, such as jerks or tics, hyperactivity, mood changes, obsessive compulsive disorder and refusal to eat food. Separation anxiety, trouble sleeping, night-time bed-wetting, and day-time frequent urination can also be signs. Experts say the quicker children are treated the better and, left untreated, the illness can cause permanent debilitation. Yet parents say they have been denied funding for a specialist treatment known as intravenous immunoglobulin (IVIg), despite it being recommended by their NHS consultants. An 11-year-old girl called Evie Priory also cannot get IVIg like William, and the bright A-grade student now has to go to special school…. ‘Thousands’ of children misdiagnosed Pediatric acute-onset neuropsychiatric syndrome (Pans) – which Pandas is a subset of – was first identified in the 1990s, and these disorders are often described as rare. But UK charity Pans Pandas UK and Pandas Network in the US estimate that upwards of one in 200 children are affected. Leading paediatric neurologist Andrew Curran, who works at the world renowned Alder Hey Children’s Hospital in Liverpool, previously told i that he fears “thousands” of children in the UK may have Pans or Pandas, and have been misdiagnosed as having mental health problems…. It’s believed that in Pandas, a child’s immune system fails to respond correctly to the strep infection, resulting in brain inflammation. It’s not easy to diagnose as there’s no single test – often it is their behavioural symptoms getting better after having antibiotic or anti-inflammatory treatment which confirms Pandas. Pandas is likely to come back if a child gets strep again, and, although it may take time, most recover completely with antibiotics to treat the underlying infections. But if this doesn’t work and patients are severe, doctors may consider IVIg, a more extreme procedure to reset the immune system using a blood product comprised of antibodies. National shortage of IVIg There have been some studies suggesting IVIg is effective, however, there is a lack of long-term research, no general agreement on Pandas treatment and no guidelines from the National Institute for Health and Care Excellence (NICE)…. Georgia Tuckey, an NHS nurse who co-founded the charity Pans Pandas UK after her son fell ill, told i: “It’s shocking that children are being refused treatment that is recommended by their hospital neurologists. These are experts in their field and their opinions are being ignored. There is a real lack of education and awareness about Pans and Pandas among the medical community. “These children are really suffering and risk ending up being pumped with psychotic drugs in psychiatric wards or needing special education totally unnecessarily. The cost of the treatment will be outweighed by the further burden on the NHS and on social care.” NHS England has been approached about why decisions were made relating to William and Evie’s cases that went against the childrens’ doctors’ treatment recommendations. The body did not respond to this request, but said: “It is already common practice to treat any infection with the appropriate antibiotics, and it is also recommended that children and young people are offered treatment for any associated mental health condition, in line with the existing national guidance.”