A six-year-old boy is in an induced coma after a headache turned out to be a rare condition which caused his brain to swell up.
Ellis Artist, from Clayton, West Yorkshire, started feeling ill last Tuesday – he woke up screaming because of pain in his neck and head and began vomiting.
The next day Ellis was rushed to hospital, where he became barely responsive and developed a rash on his body.
He was then diagnosed with acute disseminated encephalomyelitis (ADEM), which medics spotted using MRI scans.
Doctors do not know what to expect for the schoolboy, who has been suffering from seizures since being put into the coma last Friday.
Parents Sarah Girdwood, 34, and Paul Artist, 37, say they are preparing for the worst – the condition can lead to disabilities in severe cases.
Ellis Artist, six, of Clayton, West Yorkshire, started to feel unwell last Tuesday, waking up screaming due to pain in his neck and head, as well as vomiting
Ellis has been put in a medically induced coma after being diagnosed with a rare inflammatory condition called acute disseminated encephalomyelitis (ADEM)
He developed a rash on his body which doctors initially thought could be meningitis
Ms Girdwood, who works in a bakery, and Mr Artist, a transport manager, have been waiting at their son’s bedside, where they expect to be for around two months.
Speaking on the parents’ behalf, Ellis’s aunt Nicola Bicknell, 34, from Halifax, said: ‘We don’t know what will happen until he comes round or how severe it is.
‘We don’t know if there will be long term effects or if he will be left disabled.
‘It’s awful, it’s such a distressing time. It’s now a waiting game and it’s the not knowing that really gets you.
‘If you know what you’re looking at you can try and deal with it but it’s the fear of the unknown.’
When Ellis returned from school last Tuesday, mother-of-four Ms Girdwood gave her son some Calpol.
Ms Bicknell said: ‘He was fine after that and bouncing around.
‘Then he woke up in the middle of the night screaming that his head and neck hurt and he was vomiting because of the pain.’
The next day, Ms Girdwood kept Ellis off school and he went to stay with his grandma, Kathryn Artist.
He fell asleep and after struggling to wake him, Ms Artist took Ellis to the doctors who suggested he could have a virus.
They added that Ellis should be taken to A&E if he wasn’t any better within six hours.
Two hours later, Ms Artist rushed Ellis to the Bradford Royal Infirmary, where medics believed he could have meningitis.
Ms Bicknell said: ‘He also developed a red rash on his body.
Ellis became unresponsive when he fell asleep at his grandmother’s house (pictured, in hospital where he is still being kept in an induced coma)
Ellis’ grandmother, Kathryn Artist, took him into hospital two hours after he saw a doctor
Ellis’ parents, Sarah Girdwood, 34, and Paul Artist, 37 are preparing for the worst, considering the condition can lead to disabilities in severe cases
Ellis’ rare condition has shown to have affected his brain and spine in MRI scans
‘They thought it might have been viral meningitis so he was admitted to the paediatric ward and was given antibiotics.
‘He barely woke up and was crying and murmuring in his sleep. It was really frightening for everyone.’
Ellis was given a CT scan and lumbar puncture – a sample of fluid taken from the spine – which proved inconclusive so last Friday, January 31, doctors sent him for an MRI scan.
Ms Bicknell said: ‘Two hours later the doctor came back and said he needs to be in intensive care.
‘They put him in a medically-induced coma and transferred him to Leeds General Infirmary.
‘He had another MRI scan on Monday where they discovered the swelling had spread from his brain down his spine.’
Ellis was given a diagnosis of acute disseminated encephalomyelitis which can develop from a minor infection.
This ‘poorly understood’ condition is only seen by general hospitals once or twice a year, according to The Encephalitis Society.
ADEM predominantly affects the brain’s white matter – tissue made up of nerves.
The immune system is wrongly programmed, causing an invasion and attack of immune cells in the blood like an extreme allergic reaction.
Where these immune cells accumulate, myelin, the protective fatty substance around nerves, is destroyed.
Ellis is believed is expected to be in hospital for another two months, according to his aunt
Ellis’ younger brother Toby, three, believes his brother is in hospital with an injured leg
ADEM usually affects children and begins after a rash, other viral infections or immunisations.
Most people (up to 75 per cent) make a complete recovery. But those who do not may be left with learning, behavioural or physical difficulties.
Ms Bicknell said: ‘They don’t know what this could mean for him. They said they’ve seen people come in with this virus and go home okay but have also seen it cause disabilities.
‘He was on a ventilator, however is breathing on his own now. But he’s been having these mini seizures which they think are being caused by the swelling.’
Seizures can occur in up to one third of children with ADEM.
Ms Girdwood, Mr Artist and their three children, Jack, 14, Lewis, 11, and Toby, three, have been staying at accommodation near the hospital provided by The Sick Children’s Trust.
Ms Bicknell added: ‘His parents are by his bedside all the time. They’re up and down but are trying to stay positive and waiting to hear some good news.
‘The doctors have been really good and are giving them as much information as they can.
‘He could be in hospital for a very long time. We think it will be at least a couple of months.
‘Ellis is an energetic, happy boy. He’s quite boisterous, he’s a normal six-year-old lad who loves Bradford City football club.
‘His brothers are aware of what’s going on but they don’t really understand. The youngest, Toby, thinks he’s in hospital because he’s banged his leg.
‘He’s a tough cookie and we’re all just praying for some change.’
Friends and family have raised more than £3,000 for when Ellis comes home while his school Clayton St John CE Primary School are also raising money for him.
To donate visit their JustGiving page here.
WHAT IS ACUTE DISSEMNIATED ENCEPHALOMYELITIS?
ADEM is a type of encephalitis caused by an inflammatory reaction in the brain and, sometimes, the spinal cord, which mainly affects the nerves in the ‘white matter’ of the brain.
Often the child will have a history of an infection of some sort about two to four weeks before they become ill with ADEM.
Such infections may be ordinary and easily forgotten such as a cold, sore throat or tummy upset. The immune system overreacts to this infection trigger and causes inflammation of the nerve coverings affecting how they work.
ADEM is fairly rare. Typically, a large UK children’s hospital will admit about 10-15 children per year with ADEM. This means that there will only be 1 or 2 cases per year in every local district general hospital.
What are the symptoms?
ADEM usually starts suddenly. The symptoms can be severe and worrying.
Headache, vomiting, drowsiness and neck stiffness are all common. Loss of balance and inability to walk or stand may also quickly appear.
Seizures (convulsions or fits) can occur in up to one third of children, but they are not usually difficult to control.
What is the outcome?
Up to 75 per cent of cases have a complete recovery. However the time scale for recovery varies in individual cases.
The nervous system is often slow to repair itself, and it may take weeks, or sometimes months, to make a recovery. Children may be in hospital for a few weeks or months for rehabilitation.
Research suggests that children who do not make a full recovery may have learning, behavioural or physical difficulties.
Source: The Encephalitis Society