Ava Holden had gone to bed normal and happy, but woke up with a complete personality change that caused angry outbursts, panic attacks and extreme anxiety.
A schoolgirl who suffered a complete personality change overnight had to wait 18 months to find answers to this mysterious condition.
Ava Holden, nine years old, always loved school and he had gone to bed normal and happy. But when she woke up, she suddenly refused to go. She began having angry outbursts, panic attacks, extreme anxiety, and phobias, including frightening thoughts about germs, vomiting, and psychosis. Ava also began kicking, biting and screaming and refused to sleep alone, while on car trips she would try to open the door while the vehicle was moving.
Parents Claire, 38, and Simon, 39, told doctors it was like a “light switch” transformation. Ava was on the Child and Adolescent Mental Health Services (CAMHS) waiting list and has not yet been seen. devon live reports. But 18 months after the sudden change, a school nurse managed to find answers to the change. She suggested that Ava should be screened for pediatric autoimmune neuropsychiatric disorders like PANDAS.
PANDAS is a rare condition associated with streptococcal infections. Young people with common infections that cause a misdirected immune response and brain inflammation can contract PANDAS.
Mum-of-two Claire said: “It’s been absolutely horrible for the whole family, particularly of course Ava. When I asked her what it felt like to go through that, she said: ‘It was like my brain was on.’ . fire and I was sad all the time.’ It’s so heartbreaking that he was in that state. For a long time we didn’t know what it was. PANDAS occurs in patients with sudden extreme anxiety and some may develop ticks or even be unable to walk. Others have speech regression and it’s all caused by inflammation of their brain due to an infection.”
The family now hopes to raise awareness about this condition, as very few people know about PANDAS. Claire said: “We desperately needed help but felt like we had been left on a list and had to deal with it alone at home. “The scary thing about this is that many children are misdiagnosed and given treatment for mental health problems or are told they have special educational needs when in reality your body is trying to fight infections.
“In Ava’s case, it was caused by strep infections, but we have learned from other parents that viruses like chickenpox and Covid can also cause it. Both times Ava’s infection was missed because she was asymptomatic. The only The reason we knew something was the bad thing was because of her sudden and dramatic change in behavior. Ava was the complete opposite of what she had been before. You couldn’t compare the two because they were like completely different children.
“His behavior was off the chart rage and panic, as if he was in the fight or flight stage of his brain. He no longer liked being in the car and would try to open the car door when we were moving. There were numerous occasions where “I had to call the mental health crisis team because I was having psychotic episodes that could last more than an hour. She was absolutely terrifying and nothing we did could calm her down.”
When the school nurse sought advice from CAMHS, PANDAS was suggested as a possible cause. Claire said: “It was the first time I had heard of it and I realized this was what it was. “We went back to our GP and, as recommended by the charity PANS PANDAS UK, ordered a strep swab and blood test came back positive. I think our GP was as surprised as we were as he didn’t have normal strep symptoms like a. sore throat and temperature. The doctors didn’t even think she had an infection, so he opted for mental health.”
National Health Service The guidelines meant Ava could only receive a five-day course of antibiotics. Following advice from PANS PANDAS UK, the family turned to private treatment through a PANDAS specialist who recommended a longer treatment of 30 days, followed by a reduced dose for another two weeks.
Claire said: “As soon as he started taking antibiotics, many of his symptoms disappeared and he returned to his usual self. His psychosis, anxiety and rage stopped very quickly, but the brain needs time to return to normal. We just can’t. I don’t think it is recognized more within the NHS. My fear is that if someone hadn’t told us about PANDAS we would still be on the CAHMS waiting list when all she needed was some antibiotics. We are still on the waiting list for it. CAHMS. line since the last two years have been traumatic for her.
“Now she goes to school completely happy and rides in the car without any problems. Her handwriting is back to normal instead of being big and crazy. She had a sleepover at a friend’s house, something she hadn’t done in more than two years, and she’s back to sleeping in her own room. She looks good now and she’s our normal, healthy, happy Ava.”
