A schoolgirl who had a complete personality change overnight had to wait 18 months to find answers for the mystery condition.
Ava Holden, nine, always loved school and had gone to bed her normal, cheery self. But when she woke up, she suddenly refused to go. She began to have outbursts of rage, panic attacks, extreme anxiety and phobias – including terrifying thoughts about germs, vomit and psychosis. Ava also started to kick, bite and scream and refused to sleep on her own, while car journeys saw her attempting 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 out on the Child and Adolescent Mental Health Services (CAMHS) waiting list and is still yet to be seen, Devon Live reports. But 18 months after the sudden change, a school nurse managed to find answers for the change. She suggested Ava should be examined for paediatric autoimmune neuropsychiatric disorders such as PANDAS.
PANDAS is a rare condition associated with streptococcal infections. Young people with common infections that lead to a misdirected immune response and brain inflammation can pick up PANDAS.
Parents Claire and Simon told doctors Ava's personality changed like a “light switch” (Submitted)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."
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The family now hope to raise awareness of the condition, with so few people knowing about PANDAS. 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."
The 9-year-old is now going to school 'completely happy' (Submitted)When the school nurse sought advice from CAMHS, PANDAS was suggested as a possible cause. 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."
NHS guidelines meant Ava could only have a five-day course of antibiotics. Following advice by PANS PANDAS UK, the family turned to private treatment through a PANDAS specialist who recommended a longer course of 30 days, followed by a reduced dose for another 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. 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. We are still on the CAHMS waiting list as further down the line as the past two years have been traumatic for her.
"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."
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