A schoolgirl who went to bed “happy” experienced a shocking personality change overnight due to an infection. Ava Holden fell asleep “normally” in September 2022, but woke up feeling like her “brain was on fire.”
His parents said it was like a “switch” had been flipped. She immediately developed abnormal rage attacks, extreme anxiety and panic attacks, as well as phobias including intrusive thoughts about germs, vomiting and psychosis.
The then nine-year-old began kicking, biting and screaming and would not sleep alone. She also began refusing to go to school even though she had always loved it.
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Doctors initially believed she was suffering from Mental health problems and she was referred to Child and Adolescent Mental Health Services (CAMHS), reports DevonLive. She is still not seen.
But her symptoms only began to improve when a school nurse suggested her parents look into the possibility that she had PANDAS – pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. It is a rare disease that affects young people when common infections trigger a misdirected immune response and brain inflammation.
The diagnosis has since been confirmed, with Ava being treated with antibiotics. She is now 11 years old and enjoying life again.
But his parents Claire, 38, and Simon, 39, say the outcome could have been different if they had not been informed of the existence of PANDAS. Mum-of-two Claire said: “It’s been absolutely horrible for the whole family, especially of course Ava.
“When I asked her what it felt like to experience that, she said, “It was like my brain was on fire and I was sad all the time.” It’s so heartbreaking that she is in this state.
“For so long we didn’t know what it was. PANDAS presents in patients with sudden, extreme anxiety and some may develop ticks or even be unable to walk.
“Others have regression in their speech and this is all caused by inflammation in their brain from infection.” Claire said: “We desperately needed help but it felt like we had just found ourselves on a list and had to deal with it alone at home.
“The terrifying thing is that many children are misdiagnosed and treated for mental health problems or told they have special educational needs when in reality their bodies are trying to fight infection . In Ava’s case, it was caused by strep infections, but we’ve learned from other parents, viruses such as chicken pox and Covid can also cause it.
“Both times, Ava’s infection was not detected because she was asymptomatic. The only reason we knew anything was wrong was because of his sudden and dramatic change in behavior.
“Ava was the complete opposite of what she was before. We couldn’t compare the two because they were completely different children.
“Her behavior was one of uncommon rage and panic, as if she was in a fight or flight phase in her brain. She no longer liked being in the car and would try to open the car door when we moved forward.
“We had to call the mental health crisis team several times because she was having psychotic episodes that could last more than an hour. It was completely terrifying and nothing we seemed to do could calm her down.”
-A GP referred Ava, from Newton Abbot, to a pediatrician at Torbay Hospital in January 2023. Tests, including scans and blood tests, revealed no problems.
The family thought Ava was improving as she began to behave more like usual between March and July last year. But the symptoms returned in August.
Claire said: “It was like a switch had flipped again. Ava went off the rails in exactly the same way as before. The more we thought about it, the more we didn’t think it was a mental health issue, but that something else was involved. Maybe it was my mother’s intuition.
Ava’s concerned school nurse contacted her parents and told them she had sought advice from CAMHS, who suggested she look into PANDAS. Claire said: “It was the first time I heard about it and I knew straight away that this was it.
“We returned to our GP and, as recommended by the charity PANS PANDAS UK, ordered a strep swab and blood tests. They tested positive. I think our GP was just as surprised as we were because she didn’t show up. Normal symptoms of strep like a sore throat and temperature.
“The doctors didn’t even think she had an infection, which is why she chose the mental health route.” Ava was only allowed a five-day course of antibiotics, under current NHS guidelines.
The family sought private treatment through a PANDAS specialist who recommended a longer antibiotic course of 30 days, followed by a half-reduced dose for a further two weeks. Claire said: “As soon as she started taking antibiotics, many of the symptoms disappeared and she was back to her usual self.
“His psychosis, anxiety and anger stopped very quickly, but it takes time for the brain to return to normal. In February we were finally able to see an NHS neurologist at Bristol Children’s Hospital.
“He reconfirmed it was PANDAS and as she reacts so badly to strep and has already had two episodes, if she gets it again she will be prescribed 30 days of antibiotics on the NHS and they will carry out d other tests because they are still learning a lot. on this subject.
“We just can’t believe this isn’t 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 antibiotics.
“It is recognized among older people that if they become delirious and confused it may be due to an infection, so why couldn’t the same be true for children? We are still on the CAHMS waiting list as far back as the last two years. These years were traumatic for her.
“We don’t know how much she remembers or tries to block them out and she’s probably afraid it will happen again. There’s a chance this could happen, but at least we now know what we’re dealing with.
“We saw the biggest change in Ava over the last eight weeks because she still had a lot of character traits. Now she goes to school completely happy and gets in the car without any problems.
“His writing 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 over two years, and started sleeping in her own room again. She looks good.
“She is now our normal Ava, healthy and happy and she is a delight.” Ava’s parents are set to embark on a 102-mile cycle ride from Ilfracombe to Plymouth in July to raise money for PANS PANDAS UK.
Claire said: “I’m desperate to raise awareness. If your child suddenly develops symptoms and you can’t think of an obvious trigger that might indicate it’s a mental health problem, see your GP, as they may. Having a brain infection is relatively easy to treat with simple antibiotics and, in the long run, would save the NHS time and money.
“It would also prevent these children and young people from going undiagnosed and suffering.” View the fundraiser here.
