Devon schoolgirl misdiagnosed after shocking personality change

Ava Holden, left, when she was poorly and her condition was undiagnosed, and right, after receiving a diagnosis and treatment
Ava Holden, left, when she was poorly and her condition was undiagnosed, and right, after receiving a diagnosis and treatment -Credit:Submitted

A Devon schoolgirl who was misdiagnosed as suffering from mental health problems for two years after her personality and behaviour changed overnight is now almost back to her usual self after being prescribed a long course of antibiotics. Ava Holden, of Newton Abbot, had gone to bed her normal, happy nine-year-old self in September 2022, but when she awoke her parents described it as having been like a 'light switch' being flicked.

She instantly developed abnormal rage outbursts, extreme anxiety, panic attacks, phobias including intrusive thoughts about germs and vomit and psychosis. She started kicking, biting and screaming and wouldn't sleep alone.

She also began refusing to attend school, despite having always enjoyed going. The only help she and her parents Claire, 38, and Simon, 39, received was being told Ava had been added to the Child and Adolescent Mental Health Services (CAMHS) waiting list and is still yet to be seen.

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Her symptoms only began to improve after Ava's school nurse suggested they investigate the possibility that she could be suffering from PANDAS - paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections - a rare condition that affects young people when common infections trigger a misdirected immune response and brain inflammation.

After the diagnosis was eventually confirmed, Ava was treated with antibiotics. Now aged 11, she is back to fully enjoying life again but her parents know the outcome could have been so very different if they had not been told about PANDAS.

Ava Holden with her parents and brother enjoying a family bike ride
Ava Holden with her parents and brother enjoying a family bike ride -Credit:Submitted

Claire, a mum-of-two, 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."

However, as awareness of PANDAS in the UK is low, Ava spent a long time undiagnosed and instead awaiting mental health support.

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."

Four months after the change in her behaviour, the family's GP referred Ava to a paediatrician at Torbay Hospital in January 2023. Numerous tests, including scans and blood tests, didn't detect any problems so their wait for mental health support continued. A glimmer of hope arrived between last March and July when Ava started to behave more like her normal self again.

Claire recalled: "We thought she had been cured. It also made me think it couldn't be to do with mental health for it to switch on and off like that, but we were still thinking it was great and that we would just wait for CAHMS."

However, their joy was shortlived because by August the symptoms had returned again in full force.

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."

It coincided with Ava's concerned school nurse contacting her parents stating she had sought advice from CAMHS which suggested they look into PANDAS.

Claire recalled: "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. Again following advice shared by PANS PANDAS UK, the family decided to seek 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.

The results were nothing short of what felt like a miracle for the family.

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."

To raise awareness of PANDAS in a bid to help other parents, and to raise money for PANS PANDAS UK, Claire and Simon are embarking on a 102-mile cycle ride from Ilfracombe to Plymouth in July. They have already smashed their £1,000 fundraising target by raising just over £1,400.

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."

To donate to Claire and Simon's fundraiser, please click here.