'My daughter's personality changed overnight -every parent needs to know the cause'
| Published date | 25 April 2024 |
| Publication title | WalesOnline (Wales) |
She began to kick, bite and scream and would not sleep on her own. And even car journeys proved a nightmare with the youngster trying to open the door of the moving vehicle.
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, reports Devon Live.
But 18 months later it took a caring school nurse to find the true cause for the change. She suggested Ava should be checked for paediatric autoimmune neuropsychiatric disorders known as PANDAS.
The rare condition is associated with streptococcal infections and is triggered in young people when common infections cause a misdirected immune response and brain inflammation. And now Ava is back to enjoying life once more after a course of antibiotics as she and her family look to put the past months behind them.
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."
Now the family are hoping to raise awareness of the condition to help stop others from going through what they had to deal with. With few people knowing about PANDAS it meant Ava spent a long time undiagnosed when earlier diagnosis could have seen her improving much more quickly.
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...
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