A heartbroken mum has watched her teen daughter become a toddler again after suffering from sixty seizures every day. Catherine Arries says her daughter Olivia Anderson has regressed back to a 'toddler stage' and "presents a lot younger than herself".
The 14-year-old was diagnosed with focal epilepsy in 2020, a neurological condition caused recurring seizures that affect one hemisphere of the brain, Chronicle Live reports. She also suffers from non-epileptic seizures which can lead to convulsions, paralysis, physical and verbal ticks, and hallucinations.
Catherine rushed Olivia to A&E on October 12 after she started acting much younger than her age and experiencing seizures. She has since been booked in for a doctors appointment later this month, however the mum feels that the NHS have already failed her after receiving a letter in July that Olivia had been discharged as the services felt they "couldn't help her with her locomotion at this time".
Due to this, the family have been forced to take Olivia to a private healthcare provider in London, who are currently investigating the possibility that she has PANS PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder and Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus).
Catherine and her husband Scott, from Newbiggin-by-the-Sea, first sought medical assistance for their daughter two years ago when she started feeling funny at school and was zoning out in class all the time. She also complained that she couldn't hear her teachers properly and was generally feeling a bit "weird."
Catherine called 111 and was instructed to make a GP appointment for Olivia the following Monday. However, the next day the youngster started hallucinating and was rushed to A&E at Northumbria Specialist Emergency Care Hospital in Cramlington.
Doctors put down her symptoms to mental health issues and Catherine was again told to take Olivia to the GP when it opened on Monday morning. By the Sunday, Catherine says Olivia was mute and couldn't recognise her own family or their home. She was taken back to hospital and the neurologists at the RVI were contacted.
The teen underwent several tests for brain infections and encephalitis, before her eventual diagnosis of focal epilepsy. In December 2020, Olivia started to have convulsion seizures and was put prescribed emergency medication,with more testing discovering that these seizures were non-epileptic.
Since then, Catherine says her daughter's condition has continued to deteriorate, with the teen receiving little help except from her weekly counselling sessions with Northumberland's Children and Young People's Service. Specialists here have said that Olivia's regression to a toddler stage could be part of disassociation disorder, however cannot give a definite diagnosis as she "doesn't present typically as anything they normally see."
As a result of her seizures, the teen now requires a wheelchair at all times. Her condition has turned the family's life completely upside down, with Catherine saying that they still don't have any answers as to why. She also claims that Olivia hasn't had an appointment with a paediatric neurologist in over a year, with their last communication being a letter acknowledging test results were received on December 15 last year.
Catherine said: "She goes mute at times and she can be mute for days on end, on her face it looks as though her brain is just collapsing. You can see on her face that she's just not computing and she doesn't recognise us.
"It's been hell, it's been horrendous. We've obviously both got full time jobs and my mam has had to retire to help support and look after Olivia.
"For the last six or seven weeks, she hasn't been in school. I'm off on the sick from work because I'm struggling with how things are with her and I just feel really desperate that there doesn't seem to be anything we can do.
"She begs us to help her and make it stop, she says it feels like her head's going to explode because there's so much in there, she asks us "why me?" It's soul destroying as a parent not to know what's going on with her and not to know what the answer is or what an outcome can be."
"She's a shell of her former self at the minute, before all this she loved make up, doing her eyelashes and doing TikToks and she'd make everybody laugh. She had a really good set of friends she used to go out for meals with or into Newcastle with, but obviously she doesn't do any of that now - she'd chosen her GCSE's and was doing really well at school too."
Olivia has three other siblings, aged 18, 16 and 10, whom Catherine have been "massively impacted" by Olivia's health struggles. Her younger sister has even joined a young carers support group to get help.
The mum continued: "They've seen their sister go from a normal 12-year-old to this and it's hard for them. The other two have had to go through their GCSEs at this time and they're obviously worried about their sister as well."
Catherine has since started a GoFundMe page to help get Olivia further support, which achieved its fundraising target within 24 hours of going live. She said: "It's amazing, a lot of that is from both mine and my husband's close friends and families. At times it's felt really alone over the last two years because as a family the outside world doesn't really see what we're going through.
"But that just shows that there are people out there who want to support us and want to help get some answers for Olivia so it's just lovely to feel as though people care about her and want to help."
If you would like to donate to Catherine and Scott's page, you can find out more here.
Don't miss the latest news from around Scotland and beyond - Sign up to our daily newsletter here.
