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PANS is a neuropsychiatric illness in children in which there is the sudden onset of OCD and/or tics, which has been identified by researchers at the Pediatrics & Developmental Neuropsychiatry Branch of the National Institute of Mental Health (NIMH). It is more commonly known by its former acronym, PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection, because the first known cases were in children who had strep throat and then suddenly developed obsessive-compulsive disorder (OCD) and/or tics. Now it is known that other infections such as mycoplasma, certain viruses, and Lyme disease can also produce the same symptoms, so the current name is PANS. As with any newly identified syndrome, the diagnosis is controversial. Neither PANDAS nor PANS is currently listed as a diagnosis by the International Statistical Classification of Diseases and Related Health Problems (ICD) or the Diagnostic and Statistical Manual of Mental Disorders (DSM).
Most people may not have heard of PANDAS or PANS. I will tell you about PANDAS, because that is the illness about which I am most familiar with clinically. Some researchers say it does not exist. Others are certain that it does, but is rare. Some claim it is even more prevalent than autism but goes undiagnosed and untreated in most children who have it. Some pediatricians are immediately dismissive of the possibility that the child’s symptoms suggest a possible PANDAS diagnosis. Those who do not dismiss the possibility of PANDAS often do not know what kind of strep to test for, and most labs cannot detect it properly, so it is essential that the physician making the diagnosis be very knowledgeable about the illness. Unfortunately, few physicians are.
The PANDAS diagnosis is used to describe a set of children who have, typically, rapid onset of obsessive-compulsive disorder (OCD) and/or tic disorders such as Tourette Syndrome (TS). Tourette’s is characterized by motor tics and at least one vocal tic, which wax and wane, such as blinking, coughing, throat clearing, sniffing, facial movements, jumping, swatting, uttering obscenities. Sometimes the OCD may center around eating. An isolated tic is generally not Tourettes, and is usually caused by stress. PANDAS begins typically several months following a group A beta-hemolytic streptococcal (GABHS) infection such as strep throat or scarlet fever.
The exact number of PANDAS sufferers isn’t known, since the disease was only discovered in 1998 by Susan Swedo MD, Chief of the Pediatrics & Developmental Neuropsychiatry Branch of the National Institute of Mental Health (NIMH), and is just now receiving attention by the medical community. Swedo has focused on diagnosis and treatment of childhood neuropsychiatric conditions (Sydenham’s chorea, Tourette Syndrome, OCD, and autism spectrum disorders. While in the more usual cases of OCD the illness typically develops gradually, with signs for months or even years before the symptoms become noticeably dysfunctional; In PANDAS the onset is dramatic and sudden. Parents of children with PANDAS say it is as if their child went to bed as the child they knew and woke up as someone they barely recognize.
For an estimated 25-30% of children with OCD, the episode is thought to be triggered or exacerbated by an autoimmune reaction, in which the body’s own immune cells, instead of attacking the strep bacteria, attack the basal ganglia (brain stem) instead.
The brain stem is involved in producing OCD symptoms. The rituals and the thoughts themselves in OCD have a tic-like quality, out of context and seemingly uncontrollable. For example, these patients do not say “ I have a twitch in my hand” but as a rule say “I have to move my hand that way”. There is no other disorder in which patients clearly believe that they do not have the will to resist these impulses or thoughts.
The diagnosis of PANDAS is a clinical diagnosis. If the behavior suggests PANDAS, and the child tests positive on the blood test, it is likely he has PANDAS. Both a throat culture and a blood test that looks for streptococcus antibodies (serology for ASOT and AntiDNAseB) can identify a recent strep infection. Usually the physician will test for Lyme disease and mycoplasma as well to make a differential diagnosis. It is possible to get a false negative result from the throat culture. The blood test is more accurate, and will come back positive if the patient has ever been infected with strep. The blood test comes back with a number called the strep titer, which tells you the level of antibodies in the blood. When the titer is high, it signals a recent infection, even if the child has no clinical history of strep, not even a sore throat. But many times the titers will be only moderately elevated – and at times not elevated or extremely elevated. It is important to swab all family members to be sure no one is asymptomatic when infected or a possible strep carrier. Carriers will often not show any strep symptoms, but if tested, will be positive for strep. A carrier will need one or two doses of antibiotics to rid himself of strep. The course of the illness is episodic, some days better, others worse. The onset in some children is clearly debilitating and they become nearly catatonic and homebound. Other children can function at school and then fall apart at home for hours on end. BUT IT IS CLEAR – THE FORMERLY NORMALLY FUNCTIONING CHILD IS GONE. Researchers believe that kids with a family history of OCD may be more susceptible to PANDAS, suggesting that genetic vulnerability may play a greater role in early-onset OCD than in later onset OCD.
Although the first episode or recurrence of PANDAS is triggered by a strep infection, children do not “catch” OCD from strep, as the title to a book about a boy with PANDAS suggests. Saving Sammy: Curing the Boy Who Caught OCD was written by Beth Maloney, Sammy’s mother; I suspect she titled it as she did because the startling notion that OCD can be caught would sell more books. The doctor who treated him wrote “Of all the children I've treated, Sammy is the one at both ends of the spectrum. I'd never seen one so sick or one who came so far. I think the difference was his mother. Her willingness to be aggressive and fight for her son may help in healing others." Beth Maloney is a lawyer so she knows how to fight. But you don’t have to be a lawyer to get the kind of help your child needs. You need to persevere. Most recently Beth Maloney published Childhood Interrupted: The Complete Guide to PANDAS and PANS. The link to her website, is below and is very thorough, and there are links to others as well.
When symptoms appear or a sore throat persists, it is advised that parents seek medical attention from a doctor experienced in the diagnosis and treatment of PANDAS.They should also seek out a psychotherapist who is experienced in treating children with PANDAS. There are links to PANDAS websites (below) that have this information. Treatment is both medical and psychological. Except in the more resistant cases, medical treatment generally consists of antibiotic treatment. Psychotherapy for children with PANDAS is the same as if they had other types of OCD or tic disorders—cognitive-behavioral therapy (CBT), through which the child learns that he can have more control over these nasty symptoms than he thinks and the more he practices what he learns through CBT, the greater his control grows.
Some researchers advocate specific nutritional supplements that target brain structures and probiotics (beneficial bacteria) to replace the ones that antibiotics kill in the gastrointestinal system. The Journal of the American Medical Association was slow to acknowledge the value of nutritional supplements for disease prevention, finally doing so in 2002. This is because in Western medicine there is a dichotomy between the body and the mind, which has a powerful negative effect on how patients are treated, based on the assumption that there is physical pain and there is mental pain and never the twain shall meet. This also explains a good deal about why so many people are seeking out alternative medical practioners.
Based on evidence that there is a recovery period (as the GABHS antibodies reduce to normal) after the strep infection is over, it is thought that helping the brain recover with nutrients may reduce vulnerability to further damage by the strep antibodies. There are conflicting findings of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin, a blood product administered intravenously. (IVIG) for the treatment of the most resistant patients. These treatments require hospital stays from several days to as long as two weeks, because it involves clearing the blood of the antibodies that trigger the neurological symptoms. It is very expensive and not covered by insurance.
Providing the patient with cognitive and behavioral strategies to stop the compulsion is the primary thrust of psychotherapy. We know that the brain is not hard-wired but is plastic, and that we can literally change the way our brain is wired. Therefore, children, like adults with OCD, can master the skills to literally change the way their brain works, described by Dr. Jeffrey Schwartz in his book Brain Lock. Like adults with OCD, children need to be shown that there is a fork in the road in which they have a choice, that they have more control over their behavior than they think. They can choose to listen to the message that they must do whatever OCD rituals their brain has created, or they can dismiss this message. In this way, kids can learn that it is not they who are weird but the OCD that is weird, and that when their brain plays tricks on them, they can fight it. They feel more effective and in control and self-esteem increases.
Obsessional thoughts tend to be of aggression, contamination, checking, repeating and redoing, evenness and symmetry, perfectionism, harm to self or others, religious scrupulosity, and sex. Sexual obsessions may be especially frightening for parents, who may worry that their child has been sexually abused or exposed to inappropriate material. Parents and children should be relieved to know that “bad” thoughts are common and normal. We all have them but do not have to act on them. They don’t make you bad, just human. OCD takes these thoughts and magnifies them to the hilt. Patients must be pro-active and not wait for the obsessive thoughts and compulsive urges to go away. When behavior is changed constructively and consistently, the uncomfortable signals the brain is sending fade away with time. The bottom line is that as the patient performs fewer compulsive behaviors and pays less attention to the obsessive-compulsive thoughts, those thoughts and urges will fade more and more quickly.
I learned about PANDAS the hard way, when someone in my family was affected, and family members turned to me to get the right kind of help. This prepared me well for the first case of PANDAS I encountered in my office, Valerie, an 11 year old girl, referred by her guidance counselor. Valerie suddenly left her classroom on a Thursday to make a confession, first to her guidance counselor and then the assistant superintendant of schools, that she had allowed a classmate to look at her exam paper and was guilty of cheating. On Friday I got a call from her father and arranged to see her on Monday. In the interim, she spent the weekend confessing to her parents every bad thing she had ever done or thought of doing. (As a practicing Roman Catholic, she was used to confession.) She also had a coughing tic, less pronounced than her OCD. After talking with her on Monday about how she could fight these compulsions, when I saw her the following day, her thinking was already more normal. I met with her parents on Wednesday and told them I strongly suspected she had PANDAS, and explained what it was. Her mother had already seen a news program on television about it. I referred them to a physician who had been studying PANDAS for years, who saw her on Saturday, did the appropriate blood tests and soon prescribed antibiotics.
Given that parents have spent years literally trying to find out what was wrong with their children and have traveled great distances for diagnosis and treatment, Valerie was unusually fortunate in having been diagnosed and treated immediately after becoming ill. It was just serendipity that her guidance counselor referred her to a therapist who was knowledgeable about PANDAS. As I described, she began to respond immediately, even before starting medical treatment. I knew of a nutritional supplement that might help as well as a book specifically for kids on fighting OCD and suggested they give them a try. Her strep titers were monitored regularly and continued to diminish. I saw her weekly for less than a year and her parents occasionally. (Many parents develop something of a case of post-traumatic stress disorder when their child becomes ill, and need a great deal of guidance and support.) After the first two months, she was not talking about her PANDAS symptoms at all but about the things that are so troubling to girls her age that they come to see me about them —which boy she liked and how to get him to like her, how girls can be so bitchy and how to deal with it, why she’s angry with her best friend and what to do about it; considering going on a diet to slim down, complaining about how nosy her parents are. Then her life was going well enough that she did not think she needed to see me anymore and ended her treatment, knowing that she could always return if necessary. I have heard no more from her and hope that no news is good news.
The experience in my family and treating my first case of PANDAS have made me somewhat evangelical about educating parents, teachers, physicians, and mental health professionals about it. I did a presentation on PANDAS to one of my professional organizations; two psychotherapists present said that it made them suspect that a child they knew might have PANDAS, and referred them to me for further evaluation. I plan to do a presentation for my local community. Just last week I got three PANDAS-related phone calls from parents. On their own, most parents do not know how to find help from the medical community. Few physicians, psychotherapists and insurance companies offer assistance for families of PANDAS children, and parents are largely left to research their options and often pay for care on their own.
