A mother has revealed how her toddler began clawing at her own skin and cowering from an ‘evil monster’ due to a rare disease that attacks the brain.
Erin Smolinski, 38, and her husband Larry, 37, were left terrified when their three-year-old daughter, Grace, began hallucinating a sinister figure and panicking.
She had been suffering seizures for a few weeks, and was in hospital at the time of the incident, which her parents described as ‘the worst experience’ of their lives.
Grace had slowly lost the ability to walk and her speech deteriorated from whole sentences to uttering single syllables.
Neurologists diagnosed her with autoimmune encephalitis, a potentially deadly condition which causes the body’s immune system to attack healthy brain cells.
Grace is still receiving treatment now, after she was left suddenly fighting for her life before going home.
Grace, pictured before she became ill, suffered from seizures for a few weeks when her family returned from a holiday in Florida
The three-year-old, from Chicago, was hospitalised due to the rare condition encephalitis which causes the body’s immune system to attack healthy brain cells
Grace began clawing at her own skin and cowering from an ‘evil monster’ as her autoimmune disorder made her hallucinate
Erin Smolinski, 38, and husband Larry, 37, described Grace’s time in hospital as ‘the worst experience’ of their lives. Pictured with their children Elizabeth, five, and Eddie, 18-months
Mother-of-three Mrs Smolinksi said: ‘She seemed to think there was someone else in the room, and she seemed scared of that person. It was terrifying.
‘I wondered what she was seeing. The nurses told me she was likely having hallucinations.’
Grace had been experiencing seizures over a number of weeks after the family returned from a vacation in Florida.
Mrs Smolinksi said: ‘One night she had a really long one, which lasted seven minutes and our neurologist told us to seek the help of a specialist.’
Grace was rushed to Lurie Children’s Hospital, where her speech began to decline within hours.
Mrs Smolinski said: ‘She was a very vocal child and was capable of telling full stories, using full sentences.
‘She went from that to only being able to say syllables. She went from singing whole songs from the movie Moana – to hardly being able to say “Moana”.
‘We were about to be discharged when we asked if we could see the neurologist one more time.
‘She came to look at Grace and went through the videos I had of her talking on our vacation, to now when she couldn’t even string a sentence together.
‘Grace was losing her ability to walk and she started having these fits which we thought might have just been tantrums because she was in the hospital.
‘She would try and climb out of her bed screaming and rip out her IV. We couldn’t console her.
‘It was very out of character, she wasn’t the type of child to throw tantrums. She suddenly became really afraid all of the time.’
Neurologists began to treat her for autoimmune encephalitis immediately due to its seriousness.
Information on the prevalence of autoimmune encephalitis is lacking, but one paper, published in European Neurological Review, states an annual incidence of one in every 50,000 in northern Europe.
Grace, pictured in hospital, slowly lost her ability to walk and her speech deteriorated
Grace had to go on a low dose of a chemotherapy medicine for six months to fight the illness
Grace, pictured before she was in hospital, was thought to be having ‘tantrums’, ripping out her IV and being unable to console, when she was in fact having hallucinations
WHAT IS AUTOIMMUNE ENCEPHALITIS?
Autoimmune encephalitis is a serious medical condition in which the immune system attacks the brain, impairing function.
It caused by a problem with the immune system (the body’s natural defence against infection).
The immune system mistakes healthy tissue in the brain as a threat and attacks it, causing the brain to become inflamed and swell.
The body produces antibodies which attack the NMDA receptors in the brain, which are proteins that cause electrical impulses.
Their functioning is necessary for judgement, perception of reality, human interaction, memory, and the control of unconscious activities such as breathing and swallowing.
It’s not always clear why the immune system malfunctions in this way.
Some cases of autoimmune encephalitis are caused by the immune system reacting to the presence of a tumour (an abnormal growth) inside the body.
The main symptoms are flu like, but people also develop memory loss, difficulty sleeping, and may become unable to communicate or speak coherently.
They might become confused, have hallucinations or exhibit strange behaviour.
Other symptoms include seizures, loss of consciousness and movement disorders.
Source: The Anti-NMDA Receptor Encephalitis Foundation
She was treated with steroids and immunoglobulin and began to improve.
But then, just as she was ready to be discharged, Grace went into cardiac arrest and was rushed to the hospital’s paediatric ICU.
Mrs Smolinski said: ‘We were looking forward to going home when Grace had a massive seizure and she coded.
‘I just broke down as I watched what felt like 20 people work on her. She was intubated and it was an image I will never forget.
‘In those frightening circumstances all you can do it flash forward to the future and will your child be there.’
Thankfully Grace recovered and was released after two weeks in hospital. She then began a monthly regime of a chemotherapy drug, to help prevent a relapse.
Mr and Mrs Smolinski, who are also parents to Elizabeth, five, and Eddie, 18-months, credit the doctors who took the initiative to treat Grace before an official diagnosis, which saved her life.
Mrs Smolinski said: ‘I’m very lucky that the doctors at Lurie took the initiative. She would have just continued to rapidly deteriorate.’
Grace needed a lot of help at home as her balance was unsteady and her speech had deteriorated, but has now returned to preschool.
‘Luckily we had a baby boy learning to walk and a daughter who pushed Grace to use full sentences, so I think that really helped her,’ Mrs Smolinski said.
‘She recovered quite quickly. She returned to preschool a few weeks later, which amazed doctors. There is a chance of relapse and that terrifies me.
‘Although she is off her anti seizure medication, she still gets IV and IVIG once a month. This will go on until the second anniversary of her illness in April.
‘We haven’t noticed that Grace has been impacted cognitively, we will have to wait until she goes to school. Right now she’s doing great.
‘Grace is a normal three-year-old who loves her baby dolls and her scooter. We feel lucky every day.’
Grace, on her third birthday, has recovered but is on a monthly regime of chemotherapy
Grace with her siblings Elizabeth five and brother Eddie 18 months