Schoolgirl misdiagnosed with mental health problems had infection which felt like 'brain was on fire'

A schoolgirl who went to bed 'happy' experienced a shocking personality change overnight due to an infection. Ava Holden went to sleep her 'normal' self in September 2022 but woke feeling like her 'brain was on fire'.

Her parents said it was as if a 'light switch' had been flicked. She instantly developed abnormal rage outbursts, extreme anxiety and panic attacks, as well as phobias including intrusive thoughts about germs, vomit and psychosis.

The then-nine-year-old started kicking, biting and screaming and would not sleep alone. She also began refusing to go to school despite having always enjoyed it.

READ MORE: Princess Charlotte's adorable nickname that her school friends call her

Sign up to the BirminghamLive newsletter here to get the latest updates on the biggest and breaking stories.

Medics initially believed she was experiencing mental health problems and she was referred to the Child and Adolescent Mental Health Services (CAMHS), DevonLive reports. She is still yet to be seen.

But her symptoms only started to improve when a school nurse suggested to her parents that they look into the possibility that she could be suffering from PANDAS - paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. This is a rare condition which affects young people when common infections trigger a misdirected immune response and brain inflammation.

The diagnosis has since been confirmed, with Ava treated with antibiotics. She is now 11 and enjoying life again.

But her parents Claire, 38, and Simon, 39, say the outcome could have been different if they had not been told about PANDAS. Mum-of-two Claire said: "It has been absolutely horrendous for the whole family, in particular, of course, for Ava.

"When I asked her what it felt like going through it she said, 'it was like my brain was on fire and I was sad all of the time'. It's just so heartbreaking she was in that state.

"For such a long time we didn't know what it was. PANDAS presents in patients with sudden extreme anxiety and some can develop ticks or even can't walk.

"Others have regression in their speech and it is all caused by the inflammation of their brain due to an infection." Claire said: "We desperately wanted help but it felt like we had just been left on a list and had to deal with it alone at home.

"The terrifying part about it is that many children are misdiagnosed and are being treated for mental health conditions or told they have special educational needs when actually their body is trying to fight infection. In Ava’s case, it was caused by streptococcus infections but we have learnt from other parents viruses such as chicken pox and Covid can also cause it.

"Both times the infection Ava had was missed as she was asymptomatic. The only reason we knew something was wrong was because of her sudden dramatic change in behaviour.

"Ava was just the total opposite of what she had been like before. You couldn't compare the two as it was like completely different children.

"Her behaviour was off-the-scale rage and panic like she was in the fight or flight stage in her brain. She no longer liked being in the car and tried opening the car door when we were moving.

"There were numerous times when we had to call the mental health crisis team as she was having psychotic episodes that could last over an hour. It was utterly terrifying and nothing we seemed to do could calm her."

A GP referred Ava, from Newton Abbot, to a paediatrician at Torbay Hospital in January 2023. Tests, including scans and blood tests, did not reveal any problems.

The family thought Ava was improving as she started to behave more like her normal self between March and July last year. But symptoms returned in August.

Claire said: "It was like a light switch had flicked again. Ava went off the scale exactly the same 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 causing it. Maybe it was mother's intuition."

Ava's concerned school nurse contacted her parents and said she had sought advice from CAMHS which suggested they look into PANDAS. Claire said: "It was the first I had heard of it and it just clicked that this is what it was.

"We went back to our GP and as recommended by PANS PANDAS UK charity, we asked for a streptococcus swab and blood tests. It came back positive. I think our GP was just as surprised as we had been as she didn't present with normal streptococcus symptoms like a sore throat and temperature.

"Doctors didn't even think she had an infection which is why she went down the route of mental health." Ava was only entitled to a five-day course of antibiotics, according to current NHS guidelines.

The family sought private treatment through a PANDAS specialist who recommended a longer antibiotics course of 30 days, followed by a half-reduced dose for a further two weeks. Claire said: "As soon as she started antibiotics lots of her symptoms disappeared and she came back to her usual self.

"Her psychosis, anxiety and rages stopped very quickly but it takes time for the brain to return to normal. In February, we finally got to see an NHS neurologist at Bristol's children's hospital.

"He reconfirmed it was PANDAS and as she responds so badly to streptococcus and has already had two episodes, should she catch it again she will be prescribed 30 days of antibiotics on the NHS and they will run further tests as they are still learning a lot about it.

"We just can't believe it's not recognised more within the NHS. My fear is if someone had not told us about PANDAS we would still be on the waiting list for CAHMS when all she required was some antibiotics.

"It is recognised in elderly people that if they become delirious and confused it can be due to an infection so why can't that be the same for children? We are still on the CAHMS waiting list as further down the line as the past two years have been traumatic for her.

"We don't know how much of it she remembers or is trying to block out and she probably is anxious about it happening again. There is a chance it could but at least we now know what we're dealing with.

"We have seen the biggest change in Ava in the last eight weeks as she still had a lot of traits going on. Now she is going to school completely happy and goes in the car without any problems.

"Her handwriting is back to normal instead of being big and crazy. She has had a sleepover at a friend's which she has not done for over two years and she is back to sleeping in her own room. She looks well.

"She is now our normal, healthy, happy Ava and is a delight." Ava's parents are set to embark on a 102-mile cycle ride from Ilfracombe to Plymouth in July to raise funds for PANS PANDAS UK.

Claire said: "I'm desperate to raise awareness. If your child suddenly develops symptoms and you can't think of any obvious trigger for it to be a mental health-related condition, go to your GP as there is a chance they could have an infection in the brain. It is relatively easy to treat with just antibiotics and in the long term the NHS would save money and time.

"It would also prevent these children and young people from being undiagnosed and left suffering." See the fundraiser here.