By DANA PENDRICK
To see your child living happily and in good health is every parent’s dream.
But for mother-of-two Fiona Wadeson, every parent’s nightmare became reality after her daughter Kyla was diagnosed with a rare autoimmune disease at the age of three.
“The teachers rang me at work from preschool to say she had fallen over and she was walking funny,” said Fiona.
“Then on the weekend we had my nephew’s second birthday. She was on the swing and she just started hysterically screaming. It was like she was having a tantrum.”
According to the Australasian Society of Clinical Immunology and Allergy, autoimmune diseases affect around five percent of people and are more common than cancer.
Kyla, now 13, comes across as a shy but happy teenager. But beneath the surface she lives with a life-threatening condition known as anti-NMDA receptor encephalitis; a rare neurological autoimmune disease that had caused her to suffer from psychiatric episodes, involuntary muscle movement and memory loss.
There is still not a lot known about the disease and its unpredictability remains a medical mystery to doctors.
Being a registered nurse, Fiona knew that something wasn’t quite right. Five days after Kyla’s initial symptoms, she would have random screaming outbursts and was unable to stand.
“We went up to Gosford Hospital and saw a doctor and then went to the Emergency Department to get all the scans there like CT, MRI, lumbar puncture,” Fiona said.
“We stayed there overnight and did some more testing and then just went down to Westmead straight away because they had no idea.
“Everything came back normal at that stage.”
Because she was very young at the time and the disease has affected parts of her memory, Kyla does not remember much of her past.
For her mother Fiona, the darkest moments were not knowing when and how Kyla’s symptoms would occur and if her daughter’s condition would improve.
“You’re freaking out because you’re thinking the worst… but I think I was still in shock,” Fiona said.
“You just didn’t know what the outcome was going to be…whether or not she was going to have some damage or not get back to being normal.
“I was always trying to be positive and think: ‘no this will be fine. She will get better.’”
For the first four weeks at Westmead Children’s Hospital, Kyla’s brain scans continued to appear normal. At the time, doctors diagnosed her with Sydenham’s chorea, which is an involuntary movement disorder, but as her symptoms grew more complicated their diagnosis became more uncertain.
“She ended up going to the point of not talking, not walking, not eating. She was vacant,” Fiona said.
“I remember she was lying in the bed and the doctors were asking her questions like her favourite colour and it was always pink and purple, but she couldn’t get the words out.
“Then she had to go back into nappies because she lost control of that too.”
What Fiona anticipated to be a few days in Westmead Children’s Hospital ended up being three and a half months.
It wasn’t until Kyla’s fifth lumbar puncture that doctors uncovered traces of protein that showed inflammation in the spine.
Advanced electrical scans of her brain also revealed evidence of auto-antibodies that were positive against NMDA receptors, meaning her body was attacking parts of the brain that control activities such as breathing and swallowing.
“They [the doctors] gave her lots of different medications and lots of steroids. She had these different meds, like epileptic meds. They’re good for movement problems and she had a lot of antiviral and antibiotics,” Fiona recalled.
“We did a lot of occupational therapy up at Gosford Hospital in the children’s centre for fine motor skills, like cutting, colouring in, pasting, because she lost of a bit of that.”
Between 2008 and 2012, Kyla suffered four further relapses where she experienced sudden outbursts, emotional instability and language difficulties, such as slowed speech. She was treated with an intravenous immunoglobulin to help fight the disease, but each relapse was different.
“She got to a point where she was continually moving. They had to sedate her at night time, so she could sleep,” Fiona said.
“She was kind of walking…but she did have a wheelchair.
“Every time she has a relapse there’s always a chance that there’s going to be damage to the brain.”
Following her last episode in January 2012, Kyla began taking an immune suppressant to avoid further relapses.
She stopped using the drug in September 2014 and has remained relapse-free ever since. However, Kyla still has difficulties with her short-term memory.
“Sometimes within five minutes she’ll forget, but she knows her memory’s not well,” Fiona said.
“She still does dancing and netball and sports and that’s good for her coordination. Dancing’s good because you need a lot of memory to remember everything.”
A shy 13-year-old, Kyla didn’t give away too much about herself, except that she loves reading Harry Potter and enjoys the company of her dog Bosco.
She didn’t mind sharing her latest results in a research case study that assesses the neuropsychological profile of children with auto-immune encephalitis.
While her verbal intellectual skills showed to be just below average, her performance with non-verbal tasks and cognitive skills, such as reading accuracy and numeracy, were within the normal range.
“She still does tutoring for maths and we might try and do some language as well. It’s more so making up a sentence or writing stuff, but reading’s fine. She’ll read like nothing else,” her mother said.
While regular visits to Westmead have ceased, Fiona keeps in contact with the doctors. She is also a member of the ‘NMDA Antibodies support group – Australia and New Zealand’ on Facebook where she can access information and support from other people living with the disease.
She said the biggest challenge they will face in the future is the unpredictability of the disease and not knowing if Kyla will relapse again.
“As long as she can get through and do things like everyone else to whatever degree,” Fiona said.
“We just have to wait and see.”
This article was sub-edited by Sarah Muller.
Related groups:
https://www.facebook.com/groups/autoimmuneaustralia/
https://www.facebook.com/groups/330740503785703/
