A Northumberland mam has spoken of her anguish as her daughter is suffering fifty to sixty seizures a day.
Fourteen-year-old Olivia Anderson was diagnosed with focal epilepsy, a neurological condition in which the predominant symptom is recurring seizures that affect one hemisphere of the brain, in 2020 but she also has non-epileptic seizures which can cause her convulsions, paralysis, physical and verbal ticks, and hallucinations. However she has now reverted to a "toddler stage", which sees her "presenting a lot younger than herself" according to mam Catherine Arries.
Catherine took Olivia to A and E on October 12 after weeks of her constantly presenting younger and the symptoms mentioned above. She claims that the doctors told her because it was specialist, Olivia would be passed onto the neurology department at the Royal Victoria Infirmary.
Read more: Ministers may order public inquiry into NHS mental health failings for North East teens
She has since been scheduled an appointment later this month, but Catherine feels like the family were left in limbo and that they have been let down by the NHS when Olivia receiving a letter to say she had been discharged in July as the services felt they "couldn't help her with her locomotion at this time". Due to their frustration, the family have taken Olivia to London to see a private healthcare provider, who are exploring the possibility that Olivia has PANS PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder and Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus).
Catherine and her husband Scott, who live in Newbiggin-by-the-Sea, first sought treatment for Olivia two years ago, when she admitted to feeling funny at her school as though she was always zoning out, couldn't hear her teacher very well, and was generally feeling a bit "weird." Catherine called 111 on a Friday evening and was told to take Olivia to her GP the following Monday.
However, the following day Olivia started hallucinating and panicking, so Catherine took her to A and E at Northumbria Specialist Emergency Care Hospital in Cramlington. She was once again told that it was due to her mental health and she should speak to a GP when the surgery opened on the following Monday.
By Sunday, Catherine says Olivia was mute, didn't recognise her family, and was looking around the house as though she didn't know where she was. She was taken to A and E again and the neurologists at the RVI were contacted.
The teenager was subject to multiple tests for brain infections and encephalitis, and was eventually diagnosed with focal epilepsy. In December 2020, Olivia started to have convulsion seizures and was put onto emergency medication, and another test found that these seizures were non-epileptic.
And since then, Catherine says that her daughter's condition has got progressively worse, and there has been little help for her other than weekly counselling sessions with Northumberland's Children and Young People's Service; who have said that the regression to a toddler stage could be part of disassociation disorder, but there aren't any quick answers because she "doesn't present typically as anything they normally see."
Due to her seizures, Olivia now needs to have a wheelchair at all times, with her mam saying that her whole life has changed but with no answers to why. She also claims that it has been over a year since Olivia has had an appointment with a paediatric neurologist, after a short letter acknowledging test results was received on December 15 last year.
Catherine added: "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 says Olivia's struggles are having a "massive impact" on. Her younger sister has even become part of a young carers support group to get help.
Their mam 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 get Olivia further support, which raised its target within 24 hours. 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.
A spokesperson from Northumbria Healthcare NHS Foundation Trust said: "We cannot comment on individual patient care or patient cases."
A spokesperson for the Newcastle Hospitals Trust added: "We are unable to comment on individual patient cases. If the family have any concerns about the care provided we would encourage them to get in touch."
Read next
Northumberland foodbank boss slams councillor's claims people 'aren't starving in the streets'
Washington family ran for their lives after motorbike bursts into flames on petrol station forecourt
Off-duty Durham police officer and detective wife save life of dad-of-two who collapsed during run
Newcastle dad's four-year conservatory 'nightmare' after wife's terminal disease diagnosis
