Girl, 9, who loved school refused to go after waking up with new personality

A nine year old schoolgirl, Ava Holden, experienced a sudden and drastic change in her personality, marking the beginning of an 18-month ordeal. Previously a happy child who loved school, Ava suddenly refused to attend.

The once jovial youngster started having fits of anger, panic attacks, severe anxiety, and developed phobias including fears about germs, vomit, and psychosis.

She began to kick, bite, scream, and was unable to sleep alone. Even car journeys became a nightmare as she attempted to open the door of the moving vehicle.

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Her parents, Claire, 38, and Simon, 39, took her to the doctor, describing the overnight transformation as like a "light switch" being flicked. Ava was added to the Child and Adolescent Mental Health Services (CAMHS) waiting list and is still yet to be seen.

However, it took a compassionate school nurse 18 months later to identify the true cause of the change. She suggested Ava should be tested for paediatric autoimmune neuropsychiatric disorders known as PANDAS, reports Gloucestershire Live.

This rare condition is linked with streptococcal infections and is triggered in young people when common infections cause a misdirected immune response and brain inflammation. Now, after a course of antibiotics, Ava is back to enjoying life as she and her family look to put the past months behind them.

Mum-of-two Claire shared the family's ordeal: "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'."

Describing the devastating impact of the condition, she continued: "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."

The family is now on a mission to raise awareness about PANDAS, hoping to prevent other families from enduring a similar harrowing experience. Due to the lack of widespread knowledge about the condition, Ava's diagnosis was delayed, which prolonged her suffering and slowed her recovery.

Claire expressed their sense of isolation: "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."

She revealed the cause of Ava's condition: "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."

In January 2023, four months after Ava's behavioural shift, the little girl was taken to Torbay Hospital. Despite several tests including scans and blood tests, they failed to identify any issues and the wait for mental health support continued.

Between late March and July, there was a faint ray of hope when Ava seemed more like herself again. However, this was temporary and by August her condition worsened.

Claire expressed: "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."

When the school nurse consulted with CAMHS, PANDAS was suggested as a possible diagnosis. Claire shared: "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."

Following NHS guidelines, Ava was initially limited to a five-day course of antibiotics. However, based on further guidance from PANS PANDAS UK, the family sought private care from a PANDAS specialist who advised a longer 30-day course of antibiotics, then a reduced dose for an additional two weeks.

Claire remarked: "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? " She said Ava was still on the CAHMS waiting list 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."

Claire and Simon are preparing for a 102-mile cycling challenge from Ilfracombe to Plymouth in July to raise awareness of PANDAS and to fundraise for PANS PANDAS UK. They've already surpassed their £1,000 fundraising goal by raising slightly above £1,500.

Donations can be made here.

Claire stated: "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."