By Teresa Conrick
I recently came upon an article from the UK that had me wondering. I have always thought of PDA to mean “public display of affection,” a cutesy term for kissing or showing affection in public, but this article is showing a way different meaning -- I can’t do this anymore’ says mum of autistic boy as she films violent outburst
Kate, from Suffolk, has had to spend nearly £10,000 getting a private consultation after a long wait to get a diagnosis for son Jamie. Jamie was just three years old when he started becoming violent. Now seven, he is prone to kicking, punching and spitting at his mother during his frequent ‘meltdowns’.
He had been diagnosed with pathological demand avoidance (PDA), a rare form of autism that can lead to excessive mood swings, anxiety and, in his case, violent behaviour. The behaviour is not the fault of the children with PDA, as it is the condition that prompts them to behave this way. In some cases, they do not know what they are doing.
That sounded a bit like PANDAS and PANS, something we are familiar with here in the states. I looked some more and found these:
Health Secretary to probe council ‘gagging order’ on father of autistic teenager The Health Secretary has vowed to investigate the care of a severely autistic teenager whose father was gagged by council after speaking out…...The 50-year-old former college lecturer launched a social media campaign after growing frustrated at his daughter's plight. His complaints attracted the attention of Walsall Council, who tried to silence him by slapping a gagging order.
However, the determined dad is now free to speak out after winning an extraordinary High Court battle….Bethany has been locked in a secure unit in Northampton for nearly two years, where her father has been forced to kneel down and talk to her through a metal hatch.
He insists the setting is not suitable for Bethany and that being there is only making her scared and anxious due to her condition, PDA (pathological demand avoidance).
Jeremy admitted to shedding a tear on hearing the top Government minister was getting personally involved in his daughter's case. He said he had spoken to Mr Hancock to arrange a meeting.
- That sounds horrible! So then I had to see what this PATHOLOGICAL DEMAND AVOIDANCE really was.
A subset of individuals with autism spectrum disorder (ASD) resemble descriptions of extreme/‘pathological’ demand avoidance, displaying obsessive avoidance of everyday demands and requests, strategic or ‘socially manipulative’ behaviour and sudden changes in mood….A range of factors, including a negative emotional response to demands, but also phobias, novelty, and uncertainty, were perceived to play a role in triggering extreme behaviour.
Some of this sounds like PANDAS and PANS but nowhere could I find any evidence that anyone was looking into that or if any of these children were being evaluated for inflammation of the brain, infection, or autoimmune encephalitis. In the States, this has become more and more prevalent so it is being investigated more. Where are the cases in the UK of PANS/PANDAS or are they being called PDA? How about this for irony? The symbol for PDA is the PANDA!
Just like individuals with PDA, giant pandas need very specific accommodations in order to thrive and may often suffer without appropriate support; are extremely sensitive to their environments; are very vulnerable; and show how an integrated approach to their care is essential for success. Please share the image and our animation widely to help spread the word…
PANDAS is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.
PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of acute onset OCD, not just those associated with streptococcal infections.
The original PANDAS criteria specified that the associated symptoms were hyperactivity (ADHD) or other motor symptoms, but experience has shown that the list is longer….
- Severe separation anxiety (e.g., child can't leave parent's side or needs to sleep on floor next to parent's bed, etc.)
- Generalized anxiety. which may progress to episodes of panic and a "terror-stricken look"
- Motoric hyperactivity, abnormal movements, and a sense of restlessness
- Sensory abnormalities, including hyper-sensitivity to light or sounds, distortions of visual perceptions, and occasionally, visual or auditory hallucinations
- Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas
- Increased urinary frequency and a new onset of bed-wetting
- Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with or without thoughts about suicide.
- Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms)
5) Association with streptococcal infection.
At initial onset, the symptoms may have followed an asymptomatic (and therefore untreated) streptococcal infection by several months or longer, so the inciting strep infection may have gone unnoticed. However, on subsequent infection recurrences, the worsening of the neuropsychiatric symptoms may be the first sign of an occult ("hidden") strep infection. Prompt treatment of the strep infection is often effective in reducing the OCD and other neuropsychiatric symptoms.
The diagnostic criteria for PANS are as follows:
1) Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake
2) Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:
- Anxiety (particularly, separation anxiety)
- Emotional lability (extreme mood swings) and/or depression
- Irritability, aggression and/or severely oppositional behaviors
- Behavioral (developmental) regression (examples, talking baby talk, throwing temper tantrums, etc)
- Deterioration in school performance
- Sensory or motor abnormalities
- Somatic signs and symptoms, including sleep disturbances, bedwetting or increased urinary frequency.
3) Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder, or others.
NOTE: The diagnostic work-up of patients suspected of PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which might include MRI scan, lumbar puncture or electroencephalogram (EEG) in some cases. More often, laboratory studies will be warranted and should include tests to determine if there is a current infection or ongoing immunologic dysfunction.
But where is the research and the medical testing to show what PDA really is? What is causing it? I found NO medical research about it but isn’t it possible that many of these cases could be related to what so many of our kids are suffering here in the states? -- INFECTIONS that cause an abnormal immune response which in turn affects the brain yet we could also say an abnormal immune response that causes INFECTIONS to affect the brain. I could not find any research or studies that looked at biological mechanisms or evaluated their medical histories in these children but look what popped up searching the news in the UK:
Parents Joanne and Jez appeared on This Morning to raise awareness for the link between infections and psychological disorders. Their son William, now eight, started exhibiting aggressive behaviour and suffered hallucinations, thought to have been triggered by mould. Mum Johanne, 43, said: ‘It was almost over night. It was on the 13th September last year. It was out of the blue. He’d had a fever the week before and he just started hallucinating and screaming, it was horrid.’ Dad Jez added the personality change had been significant: ‘He was always happy, always smiling. He was a very loving little boy, very affectionate and very bright.’ Johanne said as things progressed he started to say worrying things.
‘In the March he started to say things like “why am I here mummy, my brain’s confused,” “I’m not sure I’m enjoying life”, which was very deep for a seven year old at the time. ‘By June he wasn’t eating the things he would normally eat. He developed a button phobia.’ It had been a big shock for the parents, whose son had been placid before becoming ‘like something from the exorcist.’ ‘He got so strong, and was literally trashing the house,’ Jez explained. ‘There were times he’d be crawling around the house on the floor on his fingers and toes like an animal and he would just jump onto a sofa.’ He confessed that William had physically attacked them ‘many times. Dr Tim Ubhi appeared on the show to explain what the child had been suffering.
He explained he’d contracted paediactric acute-onset neuropsychiatric syndrome, or PANS, which is associated with Strep. ‘A child will get some kind of infection, the body creates anti bodies and then they attack the brain and cause inflammation in a particular part of the brain that result in ticks, and obsessive compulsive behaviours, and sometimes food aversion and problem with going to the toilet,’ Dr Ubhi explained. Joanne and Jez explained that prior to diagnosis they’d been told William might have autism or pathological demand avoidance. ‘Prognosis is good if treated quickly, sometimes with antibiotics,’ Dr Ubhi said, explaining that mould could indeed have been the trigger. ‘So if we go on the basis this is a immune system disorder, then anything that stimulates the immune system may make things worse. So it does make sense.’
The doctors and evaluators who keep calling this PDA should be investigating and asking questions about the medical histories of these children. PANS needs to be on their radar. I hardly think that the UK is immune to PANS, in fact, there looks to be a parent-driven movement to get more help for families. Not one piece of medical testing, no labs of blood, and not a shred of immunological searching, seems to have ever been done on many of these children. Shame on the doctors there who have dismissed them or worse, locked them in state hospitals where a father has been forced to kneel down and talk to her [his daughter] through a metal hatch.
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a clinical diagnosis given to children who have a dramatic – sometimes overnight – onset of neuropsychiatric symptoms including obsessions/compulsions or food restriction. They are often diagnosed with obsessive-compulsive disorder (OCD) or an eating disorder, but the sudden onset of symptoms separates PANS from these other disorders. In addition, they may have symptoms of depression, irritability, anxiety, and have difficulty with schoolwork. The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances, and other inflammatory reactions.
Like PANS, children with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) have an acute onset – within 2 to 3 days – of neuropsychiatric symptoms, specifically OCD or tics (involuntary, purposeless movements). However, PANDAS patients test positive for a recent streptococcal infection, such as strep throat, peri-anal strep or scarlet fever. Like PANS patients, they also may suffer from uncontrollable emotions, irritability, anxiety and loss of academic ability and handwriting skills. Although PANDAS was identified as a medical syndrome more than a decade before PANS, it has been classified as a subset of PANS. To date, PANDAS is the only known subset of PANS, but we may discover more causes in the future.
These very ill children and their families deserve so much more. The lack of proper medical questions and investigations because the word, “AUTISM” might be attached to a child, has gone on for far, too long.