No, I am not talking about fun stuff like the newest cookware and cute animals. There is nothing ‘fun’ about pediatric autoimmune neuropsychiatric disorders. NOTHING! In this article, we’re covering PANS/PANDAS, and what you need to know.
As a parent, we do everything we can to protect and provide for our children. There are so many sacrifices we make – money, time, vacations/activities, cars (oh the dreaded minivan), possibly careers/aspirations, etc. – but we do this without a blink of an eye. There is no greater joy as a parent than to raise our kids and watch them develop and become amazing adults. To this end (but within reason) there isn’t anything we wouldn’t do for them.
We spend countless hours reading books, asking for advice, and listening to experts on the best ways to raise our children but then the unimaginable happens… Your child gets sick. And I’m not talking snotty-nosed, flu-like sick, but rather unrecognizable, lost-their-mind, ‘crazy’ sick. That’s an awful way to say it but there really is no other way to describe it when your incredible, sweet, wonderful, smart, loving child goes to bed one night and wakes up a stranger. As if someone came in during the night and stole your child and replaced them with an unrecognizable alien.
It feels like they have gone into a DEEP, DARK sleep and it happens in the blink of an eye…within hours to days. One day your child is fine and Fully Functional, the next day you are convinced you are living in the Twilight Zone and someone abducted your little one. It could read like a popular science fiction novel.
There are few things more painful than to watch your precious child become a prisoner to obsessive thinking, to the point of being nonfunctional, which leads to compulsive behaviors that make no logical sense. Irrational thoughts and worry consume them. As parents, we often pride ourselves on always being able to take away our children’s ridiculous fears (like the boogie man) or we ‘kiss it and make everything better’ but in this case, they trust their “OCB” (Obsessive-Compulsive Brain) as a more protective guardian….they believe it has become their better parent.
There are no words, no reasoning, nothing you can say or do that will convince them that “OCB” is harming them. NOTHING! Just to complicate things more, they trust “OCB” more than they trust you but they also have fear of being separated from you, that something will happen to you, and that it will be their fault. None of it makes sense!
They become aggressive, angry, impulsive, age-inappropriate, verbally and physically abusive, and can’t sit still or turn themselves ‘off’, often leading to sleep disturbances and insomnia. Your straight-A student now can’t add basic numbers or comprehend (or sit still for) a simple story. They may develop a tic or unusual motor movement that they are unaware of and certainly can’t stop.
As if that’s not enough, they lose bladder control and begin urinating frequently and often in their clothing. It is UNBEARABLE and as parents, we can’t fix it! Their brain is under attack….and worse, it is their own body attacking it. This is an autoimmune inflammatory process. I call it ‘Inflame Brain.’
A better way to explain Inflame Brain is to imagine an army (your immune system) fighting a war (against all possible foreign invaders like bacteria, viruses, toxins, etc.) but the army soldiers get confused and they start attacking their own base (tissues, including the brain) because it ‘looks’ really similar to the foreign invader. It is utter chaos! This is known as molecular mimicry.
In PANS/PANDAS, your body’s traditional protective mechanisms stop protecting but engage in a full-on assault of your brain.
Despair, failure, and hopelessness don’t even begin to describe the way you feel as a parent. Worse yet, friends, family, teachers…even your doctor may not understand this ‘new’ behavior and assume some parenting flaw or abuse is the cause. It is a devastating and incredibly lonely place to be. Parental guilt is dangerous and your own health may deteriorate as a result of the stress, worry, lack of self-care, and lies you begin to believe.
It is estimated that as many as 1 in 200 children are affected by PANS/PANDAS. This is an epidemic and few physicians are informed and able to provide support and the treatment that parents and these children desperately need.
Dr. Kiki Chang, the professor of psychiatry and behavioral sciences at Stanford University Medical Center, says, “We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder. But given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses.”¹
They are pediatric illnesses characterized by abrupt onset neuropsychiatric symptoms. Before we go into details we should start with a little science and history.
Group A Strep (GAS) is an important human pathogen and is associated with numerous infections but most commonly pharyngitis. Acute Rheumatic Fever (ARF) is a well-known complication of GAS-associated throat infections. It is an autoimmune process where the body attacks the heart, joints, and brain. This is thought to be an example of proposed molecular mimicry. GAS is the foreign invader. Your immune system recognizes it as foreign and ‘memorizes’ the amino acid sequence and scans the body to make sure no other invaders got past it. During this scan, this amino acid sequence mimics that of the heart, joints, and brain. Your immune system now views these tissues as foreign and begins to attack them.
Sydenham chorea is recognized as the principal neurologic manifestation of Acute Rheumatic Fever. Involuntary movements, obsessive-compulsive symptoms, and other neuropsychiatric symptoms such as hyperactivity and emotional lability characterize Sydenham chorea.
Sound familiar? It can be found in up to 30% of ARF cases, is often seen up to six months after the throat infection, and may be the only findings the patient presents with.
In the late ’80s, Dr. Susan Swedo was doing research on and writing about Obsessive-Compulsive Disorder and Sydenham’s chorea. In 1998, she along with her associates first described PANDAS. It has been described as the ‘half-cousin’ of Sydenham chorea; a neuropsychiatric illness as a result of GAS. PANDAS is a subset of PANS.
PANS is the acronym for “Pediatric Acute-Onset Neuropsychiatric Syndrome” and is characterized by obsessive-compulsive symptoms (OCD) or eating restrictions along with acute behavioral deterioration.
PANDAS is the acronym for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.” It is a subset of PANS and was first reported by a team at the National Institute of Mental Health (part of NIH) in 1998 by Dr. Swedo. PANDAS has 5 distinct criteria for diagnosis, including abrupt “overnight” OCD or dramatic, disabling tics; a relapsing-remitting, episodic symptom course; young age at onset (average of 6-7 years); presence of neurologic abnormalities; and temporal association between symptom onset and Group A strep (GAS) infection.
PANS/PANDAS should be suspected when a prepubescent child has acute onset OCD or demonstrates food restriction behavior or a new tic accompanied by behavioral, emotional, or physical symptoms.
GAS is the known initiator for PANDAS while there is no specific trigger identified for the development of PANS. It is thought to be an abnormal immune response to any number of infectious triggers, including Mycoplasma pneumoniae, Influenza, Lyme disease, and others. Toxins are also hypothesized as other triggers.
Get Help – not only for your child but for your family.
You are your child’s advocate – Don’t accept the ‘brush off’ from a clinician – Start with finding a physician that not only believes in but understands PANS/PANDAS and knows how to treat it.
You are your own advocate – Get yourself and your family in counseling to manage and deal with the significant stress and ripple effect this illness causes in the family
All too often children with PANS and PANDAS are misdiagnosed as having a psychiatric illness and started on psychotropic medications.
Because PANS/PANDAS symptoms can mimic other illnesses, it can be challenging to obtain the correct diagnosis but it is critical as studies have shown that when appropriate anti-infective and/or immunologic treatment is initiated patients may experience complete resolution of or dramatically reduced symptoms.
Molecular Labs – to measure circulating autoimmune antibodies against specific neuronal antigens. It consists of five tests:
– Mechanism is not completely clear
◊ Donor antibodies may retrain the abnormal antibody response
◊ Donor antibodies may overwhelm the abnormal antibodies
◊ May have a direct effect on the proliferation of the immune system (T-reg cells)
“When the righteous cry for help, the LORD hears and delivers them out of all their troubles. The LORD is near to the brokenhearted and saves the crushed in spirit.”
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