Karen Cafferky has three children – Rachael (23), Autumn (6) and Ethan (5). Undoubtedly she has a busy household so she and her husband, Joe Hurl, are used to the many ways in which children express themselves.
Initially when Ethan started demonstrating strange body movements and eye-rolling, they were told to ignore it in the hope that he would soon stop. That was two years ago. He has since been diagnosed with an extremely rare condition called Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections – or Pandas for short.
“Two years ago, Ethan started rolling his eyes up and backwards and, soon after, began clenching his fingers and bending his arms. We were told to ignore it and hopefully it would go away,” says Karen.
“One year later his tics had progressed to full body bends and crunching which hampered his walking and he could no longer drink out of a normal cup as he continually spilled. He developed irrational fears, displaying pure terror at things that hadn’t bothered him in the past. He cried easily and had many tantrums.
“He also started wetting his bed and we found ourselves walking on eggshells around him for fear of saying the wrong thing to set him off,” his mother says. “He asked us to help make him better as he wished ‘things would go back to normal’.”
In November 2012, Ethan was admitted to hospital for an EEG to rule out epilepsy but this and further tests revealed nothing about his condition. It wasn’t until January that they discovered their little boy had Pandas.
“Our son was diagnosed with Pandas by a neurologist in Our Lady’s Children’s Hospital, Crumlin, and initially we were delighted to have a diagnosis as we presumed it could be fixed,” says Karen. “But this is a little-known disorder and unfortunately doctors here genuinely don’t know how to treat it.
“While many doctors in the US treat this condition successfully with simple antibiotics, at present, Ethan is receiving no treatment. In simple terms, Pandas is like rheumatic fever of the brain and it comes and goes in flares.
“He has been up and down since January and while he had no tics from April until June, he got sick again in July and is still showing the signs of that flare-up.
“So even when he is well, we haven’t had our son fully back with us for two years.”
Bringing experts to Ireland
In July, Joe and Karen brought Ethan to the US to see a Pandas specialist.
"While we were there, I asked him if he would come to Ireland to raise awareness," says Karen. "He said yes and Pandas advocate Beth Maloney, who wrote the book Saving Sammy about her son, also agreed to come.
“Following that, two more US doctors agreed to attend so the next thing was that I found myself taking on the huge task of organising a Pandas awareness conference in Dublin this month.
“But we believe that to give our son – and others in the same situation – the best chance of treatment, we need to create awareness of the condition and bring these experts from the US to educate both doctors and parents in this country.”
And so, next Wednesday, Ireland’s first Pandas awareness conference, which Karen has organised, will take place. She hopes it will raise awareness within the medical community and help children like Ethan to lead normal, happy lives.
“According to statistics from the US, one in every 200 children in the US has Pandas and, if left untreated, it can be life- threatening,” she says. “So it is very important to raise awareness so the condition can be diagnosed quickly which is key to making a full recovery.
“Many children are misdiagnosed with OCD, Tourette’s or ADHD and some are left untreated, so creating awareness is the only way we will get quick and adequate treatment for them.
“We have received lots of support from family and friends and the community who are coming up with ways to fund this conference through climbs, runs, walks and cake sales.
“Now we want to raise as much awareness as we can about Pandas and entice as many doctors as possible to attend this event.”
Sudden onset
Dr Rosario Trifiletti from New York is a specialist in Pandas and will be speaking at the conference next month. He says the onset of the condition is very sudden and can be alarming for both parents and children.
“In its ‘textbook’ form, Pandas involves a very sudden change in the behaviour of a young school-age child,” he explains. “Parents can often point to the day, or even the hour, when the change occurs. Following days or weeks after a streptococcal infection, the child may suddenly develop symptoms of obsessive-compulsive disorder [OCD], anxiety or motor tics that can resemble Tourette’s syndrome.
“The OCD can manifest in many ways – examples are ritual handwashing, requiring things to be just so, or a sudden need to do things a certain number of times,” Dr Trifiletti says.
“The symptoms can include intense anxiety and rage, sometimes leading to dangerous behaviour such as opening car doors on the highway. Refusal to eat is another very serious symptom. In the most extreme situations, psychotic delusions and hallucinations may appear.
“Needless to say, especially when this happens quickly, it is extremely frightening for both parents and children, and it can appear that the child is losing his or her mind. Many doctors will call the symptoms ‘hysterical’ or ‘psychogenic’.
“Those few who are aware of a potential infectious trigger will dismiss Pandas out of hand once streptococcal cultures or blood tests are negative.
“I estimate that 1-2 per cent of children in the US are affected so there is no reason to believe the situation is much different in Ireland and the UK,” Trifiletti says.
“It is thus a major disorder of child psychiatry and behavioural child neurology. Although symptoms may start in infancy, the majority of cases start between ages five and 10, but there is also a distinct ‘adolescent onset’ form and perhaps adult forms.”
Supported by Fáilte Ireland, the conference will take place in
the Convention Centre Dublin next Wednesday, October 22nd, from 2-6pm. Parents, physicians, nurses, therapists, teachers and anyone interested in learning more about this condition and treatment are encouraged to attend. Admission is €25; the event is CPD recognised (4 points) and free of charge to the medical profession
.
For more information see
pandasireland.ie
