By Sharon K. Farber, Ph.D.
When a child suddenly develops food rituals, becomes unusually picky about food and loses weight, you might not think of a bacterial, viral, or other type of infection. A new paradigm shift forces us to consider that some psychiatric symptoms can be related to a biological infection. Syphilis can cause psychiatric symptoms through bacteria called spirochetes. When penicillin was first use to treat syphilis, thousands of cured schizophrenics were released from psychiatric hospitals. Spirochetes cause Lyme disease and can produce OCD, depression, self-injury and psychosis.
In Infectious Madness: The Surprising Science of How We “Catch” Mental Illness, Harriet Washington (2015), winner of the National Book Critics Circle Award, reveals that we can in fact “catch” mental illness. She presents the new germ theory, which posits not only that many cases of Alzheimer’s, OCD, and schizophrenia are caused by viruses, prions, and bacteria.
Anorexia nervosa (AN) is a life-threatening illness occurring primarily in adolescent girls and young women and is characterized by body image distortion and refusal to maintain adequate body weight. It has been found that of the 20% of anorexics who die from their illness, more die of a successful suicide attempt than of self-starvation (Bachar, Latzer, Canetti, Gur, Berry and Bonne, 2002; Pompili, Mancinelli, Girardi, Ruberto & Tatarelli, 2004). In a meta-analysis of excess mortality, AN was associated with the highest mortality rate of all mental disorders (Hoek, 2006).
A form of food restriction in children has been found that, like anorexia nervosa, overlaps significantly with obsessive-compulsive disorder (Harel , Hellett, Riggs, Vaz & Kiessling, 2001); (Vincenzi, O’Toole & Lask, 2010). Unlike the more usual anorexia nervosa, however, this obsessive-compulsive behavior is an autoimmune disorder caused by the streptococcus bacteria, a virus or other infectious agent. For an estimated 25-30% of children with OCD, the episode is thought to be triggered or exacerbated by the body’s own immune cells, strep antibodies which, instead of attacking the strep bacteria, attack the basal ganglia, the part of the brain stem that controls behavior (Chansky, 2001). Some symptoms of anorexia nervosa closely resemble those of obsessive-compulsive disorder (food obsessions and compulsions, compulsive exercise, and obsessive concern with with body shape and size (Yates, 1991). If the obsessions and compulsions are restricted to food and weight, then the diagnosis is AN, not OCD.
The pattern of OCD symptoms in PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is characterized by sharp ups and downs which may correlate with the rise and fall in strep titers, which tells the level of antibodies in the blood. When the strep titer is high, it signals a recent infection, even if the child has no clinical history of strep, not even a sore throat. The child may seem better one day, worse the next.
Children with PANDAS usually have abnormally high levels of strep antibodies. But many times the titers will be only moderately elevated – and at times not elevated or extremely elevated. If the behavior suggests PANDAS, and the child tests positive on the blood test, it is likely he has PANDAS. It is important to test 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. PANDAS is not the only immune system disease that may initially cause OCD to appear suddenly. Other disorders may need to be ruled out, including Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki’s Disease, and acute Rheumatic Fever. For children with non-autoimmune OCD, the ups and downs are more gradual, symptoms coming and going, but without acute exacerbation. And unlike the more usual anorexia nervosa, it may be accompanied by other obsessive-compulsive behavior, and motor, facial or verbal tics such as are found in Tourette Syndrome.
Unlike the more usual anorexia nervosa, the majority of those exhibiting these behaviors are boys. This syndrome, initially found to be caused by the strep bacteria, was called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus or PANDAS; when not specifically caused by strep, it is called Pediatric Autoimmune Neuropsychiatric or PANS.The initial findings about food restriction in children related to strep were by Sokol and Gray (1997) who reported three clinical cases, 2 boys and a girl. They described a 12-year-old boy whose AN worsened acutely after a group A ß-hemolytic streptococcal infection. His symptoms were alleviated after antibiotic treatment. Then Sokol (2000) presented four cases of children ages 11-15 with PANDAS anorexia in whom clinical evidence of possible streptococcal infection was found. They responded well to conventional treatment as well as to antibiotics .
The first PANDAS study was conducted by Susan Swedo , MD, (Swedo, Leonard, Garvey, Mittleman, Allen, Perlmutter, Lougee, Dow, Zamkoff &,Dubbert, 1998), a chief investigator in the intramural research program of the National Institute of Mental Health. Among the 50 children studied, boys (N=36) outnumbered girls (N=14). When asked how she gained the insight into the infectious nature of these childhood disorders, she said “It was a mom who first made the connection, not us! . . . I always give her the credit because she, like other parents, know their children better than we ever can; if doctors will just listen to them, they can give us the answers” (Washington, 2015, p. 88). Here is the story Susan Swedo heard.
Flushed with irritation, Jane emerged from Seth’s bedroom. Until recently, her son had been a quiet ten-year-old whose small rebellions rarely went beyond balking at bedtime or objecting to limits on his Internet use. But this past week, life had become an endless series of complaints and arguments. Tonight he had refused to eat his dinner, complaining that the food “looked funny” and what if it were poisoned? He could die. First patiently, then angrily, Jane had sought to reassure him, and she finally gave up after a two-hour standoff during which he had resentfully pushed food around his plate without even pretending to eat it.
Now he wouldn’t go to sleep. When she came in to turn off his light an hour after bedtime, this too became a tense debate. Seth had seen a documentary that included video images of rats running amok in the New York City subway and he whimpered that he was afraid of rats attacking him in the night.
Why was he behaving so childishly? she wondered . . .. she hated to admit it, but she was burned out on his nonstop whining and arguing. “There are no rats here. Go to sleep!” she snapped, turning out the light and slamming the door. As she headed down the hallway, she heard the light flick on again, and she stalked back, furious, and flung the door open.
“Rats don’t like the light! They might not attack me if it’s on. Please don’t turn it off,” Seth begged.
No more Discovery Channel for you, she thought wearily, and then, as the room came into focus, her heart sank. Seth was cowering on the far edge of his bed, his eyes continuously scanning the floor. She suddenly realized that behind his cranky recalcitrance and nonstop complaints, he was terrified.
She knelt by his bed. “Sweetheart, there’s nothing to worry about. Would you like to sleep in my room; would you feel safer?” Nodding gratefully, Seth hugged her waist, and soon he was sleeping beside her. She too fell into a deep slumber, but later, she awoke to the empty depression where Seth had lain and to a strange, insistent sound. The clock read 5:15 a.m. As she padded out of the room, she realized that she was hearing running water and that she had been hearing it in her dreams for a long time, maybe all night. As the word drown flashed into her consciousness, she broke into a run.
But Seth stood before the sink, fiercely washing his raw, reddened hands in the running water with a worn shard of soap – it had been a new bar yesterday – a washcloth, and a coarse nailbrush.. “Seth, honey, what are you doing?” she asked gently. “Please stop. Please.” He didn’t seem to hear her, and she knew what she had to do. “Come on, honey, you have to get dressed. We’re going to the hospital.”
When they arrived at the emergency department, she noticed that Seth’s lower lip was twitching. He sat down but then leaped from his seat to pick up every piece of paper from the filthy floor with his raw, reddened hands, his head bobbing like a strange overgrown bird’s.
Suddenly he stopped, transfixed, and then ran over and pulled her arm with all his might. “Mommy, Mommy, they’re coming to kill us! Let’s go! Now! We have to go, now!” Jane tried to calm him, but she too was beginning to panic. Then the nurse called Seth’s name. Dr. Vogel, the pediatrician, told Jane that Seth had obsessive-compulsive disorder, or OCD. He explained that children with OCD feel great anxiety and cannot stop worrying. Repeating certain behaviors, like turning lights out in a certain order, tapping a certain number of times, or compulsively washing their hands, helps to allay their fears, and it’s very difficult for them to stop these comforting rituals and behaviors.
Jane had heard of OCD, and she was relieved to have a name for Seth’s bewildering behavior and learn that it was treatable. But she was also surprised that his symptoms had come on so quickly, virtually overnight. “Is this normal?” she asked Vogel, who responded that OCD was one of the most common childhood psychological disorders and a variety of things could trigger it, but Seth had probably had these inclinations for a long time; she had just been too close to him to notice the progression.
Jane didn’t believe this. Seth had always been a placid child who smiled easily and who took skinned knees, reprimands, and playground frictions pretty much in stride. But this had changed recently, and the only unusual event in his life she could think of was several bouts with a sore throat. Seth had really suffered, spending whole days on the couch complaining bitterly about being sick, which was unlike him, unable to play, eat, or swallow without pain. As soon as one sore throat ended, another seemed to begin. After he’d been laid up with three, she learned that two of his classmates had recently recovered from strep throat. She belatedly realized that Seth, too, might have had this more serious strep infection, and she decided to take him to the doctor if he suffered another one, but he did not. He just became an anxious complainer.
Jane was racked with guilt to think that the two might be related: Would Seth have OCD now if she had taken him to the doctor for an antibiotic to halt his illness? But Dr. Vogel smiled indulgently at her fears and reassured her that Seth’s problems were psychological. They had nothing whatever to do with a sore throat, strep or otherwise.
In 1994, when Seth was diagnosed, virtually all doctors would have agreed. Psychiatry recognized that children fall prey to adult syndromes, from schizophrenia-type psychoses to anxiety disorders like OCD. Some psychiatric diseases, such as anorexia, affected children and adolescents disproportionately.
And in many ways, Seth fit the description of a typical child with OCD. The disorder typically strikes children around age ten, some of whom stop eating or fall into the grip of irrepressible tics, ceaselessly flexing their fingers, waving their hands, or jerking their heads while others, like Seth, begin to wash their hands over and over, even after the skin was cracked and bleeding.
Pediatricians ascribed diseases like OCD to psychosocial forces, and there was some evidence of a genetic predisposition; it ran in families. Even Tourette syndrome, which plagues people with involuntary movements and utterances and is considered a genetic rather than a psychological disorder, is treated with talk therapy as well as antianxiety medication because it is so often accompanied by other psychological disorders.
Jane left the hospital with a prescription for an antianxiety drug and a suggestion that she take Seth to his pediatrician for follow-up.
Sitting in the pediatrician’s Maryland office, Jane told the doctor that she just couldn’t shake the idea of a connection between Seth’s sore throat and the sea change. She knew her son, and this sudden transformation just felt, well, biological, to her; it felt like something that had happened to him, not some thing that he was. Or did every parent of an OCD child feel that way? She explained to the doctor that things had escalated very quickly: Seth had become more anxious as he recovered from these sore throats, suddenly developing nameless fears that kept him from eating or sleeping. Her messy son, Jane belatedly realized, had recently acquired a zeal for organization as well, categorizing and boxing his Legos instead of leaving them spilled across the floor of his room, alphabetizing his books on the shelf, and hanging up the clothes that he’d once left strewn in piles. It hadn’t occurred to Jane to regard this new-found neatness as a problem, but now, she thought of it as a symptom.
Jane half expected Seth’s pediatrician to shrug off her worries as the ER doctor had done, but fortunately, Seth’s pediatrician was Susan Swedo, who listened, intrigued, because Seth’s story was unusual in ways that sounded familiar to her.
Swedo had been investigating Sydenham’s chorea, a movement and emotional disorder that often arises after streptococci infections like a sore throat. Sydenham’s mostly affects children between ages five and fifteen. It is characterized by rapid, involuntary, spasmodic movements, mostly of the face, feet, and hands. The chorea, from the Greek word for “dance,” refers to these movements, which are often accompanied by muscle weakness as well as emotional and behavioral problems. Seventeenth-century English physician Thomas Sydenham described the condition in the medical literature, but by then the disease already had a long history as St. Vitus’ Dance, named after the patron saint of dancers. Our forebears knew of this illness as a compulsive danse macabre that they regarded as satanic in nature – it was a component of the devil’s rites described during the Salem witch trials.
Sydenham’s is now associated not with satanism but with rheumatic fever, or RF, which causes muscle aches, swollen and painful joints, a rash, and difficulty in concentration and writhing. As many as 30 percent of children who contract RF develop Sydenham’s, which, as Swedo knew, was the legacy of an untreated streptococcal infection. Although antibiotic use has rendered RF rare in developed countries like the United States, where it affects only one in every two hundred thousand children, it has recently made a comeback among the nation’s undertreated,
such as poor children in inner-city neighborhoods.
Not only does Sydenham’s follow streptococcal infections, but it is also seasonal, striking most frequently, like schizophrenia, during the winter and early spring. In the U.S., it is most common in the northern states.
Swedo understood that the diagnosis of Sydenham’s was fraught with opportunity for confusion, beginning with the specific nature of a child’s involuntary movements, which are not simple tics and are not repetitive like the behavior of hyperactive children. They are truly random, small, contained “piano-playing” tics rather than the wilder gesticulations of children with other disorders. Also, Sydenham’s is sometimes confused with cerebral palsy, which by definition is caused by some traumatic events during pregnancy or a baby’s first year of life. By contrast, Sydenham’s has a later onset, after an infection. Two clinical tests enable pediatricians to diagnose Sydenham’s. In one, the doctor asks the child to stick out her tongue and keep it in that position; a Sydenham’s patient will have trouble holding her mouth open and her tongue out for more than a second or two. In the other test, the doctor asks the child to squeeze her hand; a Sydenham’s patient is unable to maintain a grip with steady pressure, so the child’s hand will erratically tighten and relax, creating what doctors call the milking sign. Twice as many girls as boys are diagnosed with Sydenham’s.
Because the rheumatic fever that results in Sydenham’s is a rare complication of a strep infection, like the ones that Seth had weathered, Swedo wondered whether such infections were closely associated with other psychiatric symptoms – like Seth’s OCD. She suspected that a syndrome might connect Group A streptococci, or GAS, infections that cause strep throat to a variety of childhood mental disorders.
She knew that for some children, psychiatric symptoms were the first harbingers of Sydenham’s, as they became unusually restless, aggressive or hyperemotional even before the physical symptoms of chorea, or dancing tic movements, appeared. Other symptoms were frequent mood changes, episodes of uncontrollable crying, behavioral regression – that is, acting likc much younger children – mental confusion, general irritability, difficulty concentrating, and impulsive behavior. In the most common childhood psychiatric syndrome, OCD, intrusive thoughts, images, or impulses recurred, and children seemed powerless to abandon their compulsive behaviors. Often, affected children were seized by fears of harm coming to a family member or of intruders. They sometimes felt compelled to count silently, wash their hands over and over, organize items, or check repeatedly to ensure that a door was locked.
The rheumatic fever is itself a rare complication of a strep infection, and Swedo came to realize that such strep infections were closely associated with a repertoire of symptoms in OCD, tics, and Tourette syndrome, anorexia, and other psychiatric illnesses. Were the GAS infections really triggering mental disorders?” It was like a mystery or detective novel,” recalls Swedo. “I had to find out.”
Swedo set about finding other children to whom this had happened and came up with a cache of children who had also suddenly become mentally ill, acquiring OCD symptoms or tic disorders shortly after a bout with strep throat or another GAS infection.. As word spread that she was investigating the link, dozens of parents from the surrounding communities in the District of Columbia, Virginia, Maryland, and even as far away as Illinois and Michigan made pilgrimages to the NIMH complex to bring their anxious, OCD, anorexic, or tic-plagued children to her.
In 1995 Swedo’s team at the National Institute of Mental Health studied a group of fifty children with OCD, both with and without tics. All their symptoms had been preceded by strep throat or a similar infection. When they tested these children, they found high levels of an antigen (a substance that stimulates an immune response against a pathogen) that suggested a genetic susceptibility to rheumatic fever and to Sydenham’s chorea. Swedo found that these antigen levels were also high in children with autism.
In 1998 Swedo published the landmark paper that laid out her theory of Pediatric Autoimmune Neuropsychiatric Disorders Associated With Strep or PANDAS, that was afflicting normal children whose behavior exploded into madness within days, and sometimes overnight. First, they were paralyzed by an unfathomable anxiety. Without an apparent cause, this heart-stopping, unfocused fear of the sort that seized Seth was a harbinger of the full force of the psychiatric illness to come.
PANDAS is a syndrome, which means that it encompasses a number of disorders – OCD, Tourette’s, anorexia, and others – that share a cause. Swedo and other scientists estimate that PANDAS accounts for perhaps three of every twenty cases of such diseases. She cautioned researchers that PANDAS was not a default diagnosis and should be considered only in cases where the conventional model of illness did not explain a child’s symptoms.
Such signs and symptoms include a rapid onset. In the case of PANDAS, symptoms arise a few days after infection; Sydenham’s lag – six to nine months behind. PANDAS symptoms show a gender disparity, with males more likely to have tics and females more likely to have obsessive-compulsive symptoms. Moreover, PANDAS children regress in ways that other Sydenham’s, OCD, and Tourette’s patients do not. PANDAS children suffer a rapid deterioration of fine motor control, as shown by loss of hand- writing and drawing skills, whereas the decline is much more gradual in garden-variety, non-PANDAS-caused Sydenham’s. A picture drawn by a sixteen-year-old PANDAS sufferer looks the work of a six-year-old. This instant infantilism extends to other behaviors. Out of the blue, humiliated twelve and thirteen-year olds resume wetting the bed; some find that they cannot stem the flow of their urine even during the daytime. Preteens begin throwing tantrums, refusing to speak or eat, although the latter is often triggered by an unshakable conviction that their food is tainted or poisoned (Washington, 2015, pp. 79-87).
I learned about PANDAS/PANS the hard way over five years ago, when my oldest grandchild, Sam, five at the time, and a secure happy child, overnight seemed to be transformed into a child with a coughing tic that went on and on and obsessive-compulsive symptoms. Although he exhibited no symptoms around food, the illness was terribly frightening. 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. His stunned and frightened parents turned to me for help. Although I am a trained psychotherapist with specialized training in child/adolescent psychotherapy, I was as frightened as they were and at a loss to understand what was happening. I tried covering my fear with a sense of hope. It seemed like this was more than a child psychiatric problem. It sounded biological, more like a neuropsychiatric problem involving some glitch in the nervous system. They spent several weeks looking for a physician to help them and finally one physician said that it was a long shot but his illness might really be associated with strep, and suggested they take him to his pediatrician who could take a blood sample to determine if he had a recent strep infection. Their pediatrician arrogantly insisted there was no such illness and refused to do the blood test. Needless to say, he is no longer their pediatrician.
Because the stress on my son and daughter-in-law was extraordinary, my husband and I insisted on babysitting one evening so that they could get away. When Sam realized they were leaving, he began sobbing. In retrospect we realized that before the dramatic onset of his symptoms, he had displayed some separation anxiety, uncharacteristic of him. I insisted he would be fine left with us and although Sam was grabbing onto his mother’s leg they managed to leave. He sobbed so uncontrollably that out of frustration, my husband grabbed him by the shoulders and demanded, “Stop crying!” Sam looked up at us and said he could not stop. Just as he felt his behavior was not within his control, he thought he could not stop crying. In no other disorder do patients so clearly stress that they do not have the will to resist these impulses or thoughts. Using my intuition I said to him slowly and deliberately, “Yes you can stop crying. And you will.” I spotted a Where’s Waldo book nearby and said I wanted to find Waldo and asked who would help me. My husband volunteered and then Sam told me how to identify Waldo by his red and white striped shirt, and together we found Waldo. I asked Sam,”Aren’t you the boy who said he could not stop crying?” He said he was. “And look what happened,” I said to him. “I stopped crying, he realized and grinned from ear to ear. Tears came to my eyes and I explained to him that when he got interested in finding Waldo, he was able to use his own brain to focus his attention on that, and thus stop crying.”Your brain has more power over your behavior than you think it does.” He looked at me as if I knew something he did not. We enjoyed the evening with him until it was time to put him to bed with a story.
It took awhile but my determined daughter-in-law finally found a physician who had been avidly studying this illness and diagnosed it as PANDAS. We found that there was a genetic component, reminding me that my father had the OCD symptom of checking the gas jets on the stove a number of times before going to bed. I do not have OCD but have some obsessive-compulsive personality traits, which is not necessarily a bad thing. Many accountants and attorneys have it too. It makes it possible for me to do the research and scholarship I do, and to gather the information and resources you read here. Treatment began immediately with antibiotics and improvement was almost immediate. Even though Sam had not had recent symptoms of a sore throat, we discovered that a child could have a strep infection and be asymptomatic. A nutritionist advised that a supplement called MinTran, short for Mineral Tranquilizer, comprised largely of magnesium and calcium, might be quite helpful. There are others as well. MinTran can be found at Amazon.com. It was so helpful to Sam that his mother began taking it herself, with positive results. I was so impressed that when patients suffer from extreme anxiety and request a referral to a psychiatrist who could prescribe medication, I tell them about MinTran, suggesting they discuss it with their physician. A number of patients have found it most helpful. In fact, 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, although many physicians are wary of alternative medical approaches. Based on evidence that there is a recovery period (as the GAS 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. Alternative psychiatrists Richard P. Brown (Brown & Gerbarg, 2012) and Patricia Garbarg (2012) published How to Use Herbs, Nutrients, & Yoga in Mental Health. Parents are not likely to hear this information from physicians, nor are they likely to hear about the use of essential oils (Bakkalia, Averbec & Idaomar, 2008),which I heard about from the father of a boy with PANS who said it had been extremely beneficial to his son. Natural Treatments for Tics and Tourette’s: A Patient and Family Guide(DeMare, 2008) explains how to treat tics and Tourette syndrome using natural and alternative therapies, with a focus on environmental medicine and nutritional and dietary therapy. It also explores behavioral and counseling therapies, EEG biofeedback, homeopathy, bodywork, energy medicine, and Chinese medicine.
In kids with frequent episodes of tonsillitis, including all tonsil infections (not just those infections due to strep), removal of the tonsils and/or adenoids might help lessen occurrences of PANDAS. Some pediatricians report an 80% reduction of strep throat with tonsillectomy (Demesh Virbalas & Bent, 2015).
The most effective treatment, which may be used for the treatment of severely ill PANDAS patients, which is still experimental, is plasma exchange (also known as plasmapheresis) to filter out the misbehaving antibodies from the blood and administer immunoglobulin, a blood product, intravenously (IVIG). However, a number of side-effects are associated with the treatments, including nausea, vomiting, headaches, and dizziness. In addition, as with any invasive procedure, there is the risk of infection. These treatments require hospital stays from several days to as long as two weeks. Further studies are needed to determine the active mechanism of these interventions, and to determine which children with OCD and tic disorders will benefit from immunomodulatory therapies (Perlmutter, Leitman, Garvey, Hamburger, Feldman, Leonard & Swedo, 1999).
We discovered that my grandson’s case had been a mild one compared to others we heard about. Soon after he was diagnosed and treated, my first case of PANDAS was referrred to me, a twelve year old girl who was suddenly compelled to confess to her parents, guidance counselor, and assistant principal all the bad thoughts she had ever had. It was fortuitous that she was referred to me because I recognized it as probable PANDAS, and knew a physician to whom she could consult for a definitive diagnosis, saving her parents much time and effort to obtain this kind of help. As with my grandson, just talking with her about the irrational nature of OCD even before she was diagnosed and treated with antibiotics, produced a noticeable improvement. Like adults with OCD, children need to be shown that there is a fork in the road in which they have a choice. They can choose to listen to the message that they must do whatever OCD rituals their brain has created, or they can chose not to listen to this message, and regard it as a brain-trick that they can beat. A similar approach is that of Brain Lock: A Four-Step Self Treatment Method to Change Your Brain Chemistry (Schwartz & Beyette, 1996).
One of the most severe cases was that of Sammy, whose mother Beth Maloney (2009) wrote a book about it, Saving Sammy: Curing the Boy Who Caught OCD. She wrote that his problems suddenly started . . . shortly before he turned twelve. Among other things he stopped eating and lost twenty pounds. . . .He likes to start the morning with something he calls “the usual.” When he asks for the usual, that means he wants five drinks: milk, orange juice, apple juice, pink lemonade and grape juice. He pinches his nose when he sips and drinks them in a certain order. The drinks do not all have to be at the same level in the cups. They do not have to be in any particular cups. He just needs all five juices, every morning.. . .
He does not touch his food. He uses either utensils (only those with a silver handle) or a paper towel or napkin to hold, for example, a slice of toast.. . .
He used to ask me to do certain rituals (such as carry his food a certain way ), but I wasn’t especially cooperative. (pp. 1-3).
There were rituals he had to perform before going into the bathroom, going into the house, that might involve swirling his legs, ducking, crawling, rolling his head, stepping sideways, or high-stepping. He avoided mats, doors, and faucets, did not shower or brush his teeth, and was very careful about what he touched or touched him. Diagnosed with Tourette Syndrome and OCD, after hearing from numerous psychiatrists in Maine that she should resign herself to a lifetime of repeated psychiatric hospitalizations, she was determined to find a doctor who could help him. He had been ill for a year when his mother heard about PANDAS, spoke with Susan Swedo, and her new pediatrician did the recommended blood test, which indicated his strep titers were very high and began treating him with antibiotics. He responded positively almost immediately. Finally she found Catherine Nicolaides, MD in southern New Jersey, who had treated 12 or 13 children with PANDAS. When she found out that Sammy was taking the antidepressant Zoloft, she told Beth that in some children, this kind of medication, an SSRI, can make the behaviors worse and told her to stop giving it to him. She had to drive to Dr. Nicolaides with Sammy and her two other children. Given all the rituals he had to perform, it took Sammy two hours to get from the house to the van. Bathroom breaks often took an hour or more, and there were several.
It took four years of treatment but Sammy ultimately got well and went away to college and did well. Knowing that exposure to strep could bring on an attack of PANDAS, Sammy kept a prescription for antibiotics in his wallet for “just in case.” On the back cover of Saving Sammy his physician Catherine Nicolaides 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 subsequently published Childhood Interrupted: The Complete Guide to PANDAS and PANS(2013), with listings of physicians and psychotherapists who treat children with PANDAS/PANS. There are also several such websites listed below.
In a more recent NIMH study by Swedo and associates (Swedo, Leckman & Rose, 2012),the sudden onset of eating restrictions in a child was a defining feature of the clinical presentation of a novel group of 50 children with PANS. As in the first 50 cases (Swedo et al., 1998), boys outnumbered girls, this time by 2:1. The OCD symptoms may include more typical OCD symptoms or may center around eating, with subjects also reporting a severely restricted food intake. OCD and AN are related not only by their very high comorbidity (Blinder, Cumella & Sanathara, 2006) but by malfunctioning of their neurotransmitters (Jarry & Vaccarino 1996). Even more recently, Toufexis, Hommer, Gerardi, Grant, Rothschild, D’Souza; Williams,; Leckman, Swedo & Murphy (2015) studied disordered eating and food restriction in children with PANDAS/PANS, finding a remarkable preponderance of boys 2:1.
Although papers about PANDAS have been published in the Journal of the American Medical Association, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) describes PANDAS under the heading “Obsessive-Compulsive and Related Disorders Due to Another Medical Condition” (American Psychiatric Asssociation, 2013).
