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An autoimmune disease characterized characterized by  streptococcal infection that mainly affects children. It is  hypothesized that PANDAS is the result of antibodies produced to combat streptococcal proteins but also  target brain proteins  resulting in the onset of various disorders.

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-Obsessive compulsive disorder
-Emotional changes
-Deteroration in handwriting

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- Antibiotics
-Medications
-Intravenous immunoglobulin

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Pediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections | Genetic and Rare Diseases Information Center (GARD) - an NCATS Program

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A collection of disease information resources and questions answered by our Genetic and Rare Diseases Information Specialists for Pediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections

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- Cognitive-behavioral therapy
- Safe environment
-Restricted food and liquid intake

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In this article a clinical pharmacist and assistant professor of pharmacy practice reviews PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Authored by: CiCi Walker, Pharm.D., MPH, BCPS
[Last updated 12 November 2018]

Watching TV is not one of my regular activities, but every now and then something catches my attention. Not long ago this happened with a 20/20 episode on ABC News in which a child was screaming the word "PANDAS." It caught my eye, because it reminded me of some of the patients I have come across during my years practicing as a pharmacist. The episode is available here if you want to check it out.

Viewing the show I realized how much people (including clinicians) are unaware of this debilitating condition that affects not only patients, but also care givers and family members. In considering that this is a topic not many people are familiar with, I thought it may be a worthwhile endeavor to write an article about it here.

In this article I review information about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). It should be noted that clinical controversies related to this topic exist and an exhaustive review of the literature is beyond the scope of this article. Readers are directed to the references and suggested resources at the end of this article for more information.
What is PANDAS?
PANDAS is a subset of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) that are triggered by Group A Streptococcal (GAS) infection. The hallmark clinical manifestations of PANDAS occurs weeks to months after GAS infection and includes the sudden acute and debilitating onset of anxiety attacks (particularly separation anxiety) and mood lability ( e.g., extreme mood swings, temper tantrums, hyperactivity) accompanied by obsessive compulsive behaviors and/or tics. These symptoms are followed by motor disorders ( e.g., poor handwriting) and school performance decline.

Sydenham chorea (SD) is a neurological pediatric disorder post-GAS infection like PANDAS, but SD is characterized by choreiform movements. About 30% of prior GAS infections in SD cases are acute rheumatic fever which subsequently results in persistent cardiomyopathy (rheumatic carditis) such as valvular incompetencies. PANDAS does not typically result in such sequelae.

Syndromes with similar clinical presentations to PANDAS, but with a non-Streptococcal infectious trigger are described as Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders (PITAND).

PANDAS is more prevalent among children from ages 3 years to puberty and is rare amongst adolescents over theage of 12 years. According to the PANDAS Network, PANDAS/PANS affects about 1 in every 200 children. GAS infection rates are found to be higher during the winter months which is also observed among children with PANDAS exacerbation.

While PANDAS is still a controversial diagnosis, the original National Institute of Mental Healthdiagnosis requires that all five criteria are met (Swedo, et al., 1998):

Presence of obsessive-compulsive disorder (OCD) and/or a tic disorder

Prepubertal symptom onset

Acute symptom onset and episodic (relapsing remitting) course

Temporal association between Streptococcus pyogenes infection and symptom onset/exacerbation

Associated with neurologic abnormalities (choreiform movements, motoric hyperactivity)

Other symptoms may also occur, including anxiety (particularly separation anxiety), agitation, aggression, depression and suicidality, tics, eating disorders (i.e., food and/or fluid intake restriction), declining school performance, sensory and motor disturbances, somatic signs and symptoms such as sleep disturbances, enuresis.

The 2017 PANS Research Consortium guidelines updated criteria for PANDAS diagnosis. Patients must have one of each criterial categories in Table 1 below in order to be adequately diagnosed for PANDAS. For example, patients must have one of the listed pharyngitis or culture-documented streptococcal dermatitis and at least one of the listed antibody level criteria.

Table 1. Diagnostic criteria of PANDAS

A rise in serial antibody level, regardless of rapid test or culture result. This definition does not require clinical pharyngitis.

Acute pharyngitis with a positive GAS throat culture, with or without a rising antibody level.

Pharyngitis with characteristic palatal petechiae.

Pharyngitis with a characteristic scarlantinaform rash.

Pharyngitis without a throat swab or serology, but intimate (usually household) exposure to a proven GAS case.

Asymptomatic pharyngeal colonization documented after an intimate exposure.

Asymptomatic pharyngeal colonization after a negative throat swab documented within the prior 3-4 months.

Single ASO or ADB antibody level within 6 months after the initial onset of neuopsychiatric symptoms may be accepted as positive if it is > 95th percentile, using the laboratory's normal standard for children of comparable age, or provisionally ASO ≥ 1:480 or ADB ≥ 1:1,280.

Both ASO and ADB are elevated at > 80 th percentile for age in the same serum sample within 6 months after the initial onset of neuropsychiatric symptoms.

Culture-documented streptococcal dermatitis.

ADB = anti-DNAse, ASO = anti-streptolysin O
Pathophysiology of PANDAS
The association between Sreptococcus pyogenes and some pediatric neuropsychiatric disorders such as OCD, tics, or Tourette syndrome has been a subject of debate among researchers and clinicians. While there are more definitive animal models for SD pathophysiology, that for PANDAS is still in development.

Mell LK and colleagues found a significant association of PANDAS with prior Streptococcal infections in the three months before onset date. The risk was higher amongst children with multiple streptococcal infections within twelve months. Exposure to S. pyogenes antigens (specially 5 main strains M12, M22, M5, M3, and M89) during infections triggers host production of several antibodies, including ABD, ASO, ACHO, ABGA. Some of these antibodies have been found to last longer in the host than the others. Since there is a molecular mimicry between the immune response to S. pyogenes and brain tissue, these antibodies can cross-react and lead to the production of antigens within regions in the basal ganglia to induce lysoganglioside, tubulin, and CaMK II (calcium-dependent calmodulin protein kinase II) autoantibody activities, which in turn stimulate the production and release of dopamine at dopamine receptors. This results in onset and exacerbation of movement and behavioral disorders.

Kirvan CA suggested that infection or the antibody itself may affect the blood-brain barrier. In addition, evidence of association of GAS infection recurrence and higher risk of PANDAS suggested the possibility of an antibody threshold needed to trigger symptoms. It may take more than infectious occurrence and/or an occurrence with certain severity to induce antibody levels to the threshold in which symptoms will occur.

The cause of PANDAS continues to be researched and debated.
Is being a GAS carriers a risk factor for PANDAS?
Pharyngitis or Strep throat is a common infection among school-aged children. Transmission occurs through large respiratory droplets, passing the infection to other children or making them asymptomatic carriers. One carrier can pass the bacteria onto the next.

S. pyogenes is classified as extracellular pathogen. It causes pharyngitis by adhering to and invading the epithelial cells. This internalization may contribute to antibiotic treatment failure and the persistent carriage, as well as a negative throat swab. Carriers may continue to have anti-streptococcal immune response with persistently elevated antibody levels in the presence of the organism colonization. This at first glance,appears to pose a risk for developing PANDAS at some point once the antibody levels reach their threshold if the "antibody threshold" is proven to hold true.

While the 2012 Infectious Disease Society of America Guidelines do not recommend antibiotic therapy for asymptomatic carriers, the 2015 American Academy of Pediatrics Committee on Infectious Disease Guidelines recommends S. pyogenes colonization eradication in several situations such as a family history of rheumatic fever or rheumatic heart disease, or community outbreaks of S. pyogenes pharyngitis. The questions of whether the persistent elevated antibody levels present a constant risk of PANDAS onset in these children and whether these children should be treated for S. pyogenes eradication remains to be answered.
Treatment of PANDAS
As PANS and PANDAS display highly similar clinical manifestations, the 2017 PANS Research Consortium guidelines treat both as a single entity. The goal is to achieve remission with minimal corticosteroids.

Table 2. Therapies, agents and duration of treatment for PANDAS

Primary treatment for acute Streptococcal infection a

Oral or injectable penicillin (e.g., amoxicillin, penicillin V, benzathine penicillin)

Alternatives ( e.g, true penicillin allergy): 1 st and 2 nd generations of cephalosporins such as cephalexin and cefadroxil, azithromycin, clindamycin

10 days (except azithromycin x 5 days)

Secondary prophylaxis (for the most severely affected children and those with multiple GAS-associated neuropsychiatric exacerbations)

Penicillin V (Garvey et al. 1999)

Azithromycin (Snider et al. 2005)

Continue until at least one to two years after symptoms have abated

Continue to age 18 in the most severe cases based on the frequency and severity of neuropsychiatric exacerbations, time since previous exacerbation, and risk of GAS exposure

Symptom flares

For mild flare or early in initial presentation: NSAIDS

Until symptom improvement

For moderate to severe flare: prednisone 1-2 mg/kg/day

5 days

For moderate to severe flare not responding to po prednisone: dexamethasone pulse 20 mg/m2 po divided into 2 doses/day OR methylprednisolone 30 mg/kg IV

Dexamethasone x 3 days

Methylprednisolone x 1 dose

(tapering)

For severe to extreme flare: combination of the above therapies b

Until symptom improvement

Immune therapies

For moderate to severe flare: IVIG 1.5-2 gm/kg, maximum 70 gm/dose c

One to six monthly courses

For moderate to severe flare or evidence of inflammation/autoimmunity and objective signs of organic brain disease or frequent relapses and proven responsive to steroids, IVIG, or TPE: ributximab 750 mg/m2 (maximum 1,000 mg/dose) or mycophenolate mofetil (MMF) 600 mg/m2/dose BID (maximum 1,500 mg/dose) d

Rituximab 2 doses separated by 2 weeks, can repeat at 6-month intervals

MMF until symptom improvement

For new onset of severe to extreme flare: therapeutic plasma exchange (TPE) e

1 volume therapeutic exchanges every other day for 10-12 days (5-6 runs) OR 1.5 volume therapeutic exchanges for 3-5 days (3-4 runs)

a Non-Streptococcal infections: treatment is based on guidelines for that specific infection

b Methylprednisolone iv pulse up to 5 days alone or in combination with other therapies

c Intravenous immunoglobulin (IVIG)

d Rituximab and MMF can be alternative therapies to TPE. If patients cannot tolerate MMF, mycophenolic acid (MPA) can be used.

e Transient response in very delayed care, chronic-static, or chronic-progressive course

Non-pharmacological treatments include providing a safe environment to the child, family support and education, cognitive behavioral therapy for aggressive, obsessive-compulsive behaviors, restriction of fluid or food intake.

In addition, antipsychotic medications ( e.g., haloperidol, aripiprazole, risperidone, olanzapine, quetiapine), or selective serotonin reuptake inhibitors (SSRIs - e.g., sertraline, citalopram, fluoxetine), or benzodiazepines ( e.g., alprazolam, lorazepam) have been reported helpful for psychosis and anxiety attacks.

Immunization is recommended for both patients and family members. Standard childhood vaccines should follow recommendations from the Centers for Disease Control and Prevention, the American Academy of Pediatrics, and the American Academy of Family Physicians. Adenotonsillectomy should be limited to those recommended for the general population such as sleep-disordered breathing or frequent GAS infections due to the lack of available prospective controlled trials. Currently, there is no evidence of clinical benefits from probiotic and vitamin D.
What does the future hold?
A well-designed animal model for pathophysiology study of PANDAS will help us create more definitive criteria for earlier diagnosis in order to appropriately manage this condition early on. Prospective randomized controlled trials with longer follow-up periods are much needed to determine clinical benefits of currently recommended therapies in the guidelines. There are still conflicting data with these therapies. Garvey MA et al, 1999 and Murphy et al, 2017 did not find antibiotic treatment to be effective in either preventing GAS infections, hence avoid exacerbation of psychiatric symptoms, or reduce the symptom severity and frequency. In contrast, Murphy et al, 2015 found positive effect of antibiotic treatments. Other current therapies have similar ongoing research progression. Another aspect that has not yet been looked at is the long-term complications from some of these treatments among these children during their adulthood.
RESOURCES PANDAS-Questions and Answers (NIH) Listing of PANDAS support groups REFERENCES 1. Calaprice D, Tona J, Murphy T. Treatment of Pediatric Acute-Onset Neuropsychiatric Disoder in a Large Survey Population. J Child Adolesc Psychopharmacol. 2018; 28(2):92-103. 2. Cooperstock MS, Swedo S, Pasternack MS, et al. Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part III - Treatment and prevention of infections. J Child Adolesc Psychopharmacol. 2017; 27(7):594-606. 3. Cunningham MW. Pathogenesis of Group A Streptococcal Infections. Clin Microbiol Rev. 2000; 13(3):470-511. 4. Frankovich J, Swedo S, Murphy T, et al. Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part II - Use of immunomodulatory therapies. J Child Adolesc Psychopharmacol. 2017; 27(7):574-593. 5. Garvey MA, Perlmutter SJ, Allen AJ, et al. A pilot study of penicillin prophylaxis for neuropsychiatric exacerbations triggered by streptococcal infections. Biol Psychiatry. 1999; 45(12):1564-1571. 6. Kirvan CA, Swedo SE, Heuser JS, et al. Mimicry and autoantibody-mediated neuronal cell signaling in Sydenham chorea. Nat Med. 2003; 9(7):914-920. 7. Kirvan CA, Swedo SE, Snider LA, et al. Antibody-mediated neuronal cell signaling in behavior and movement disorders. J Neuroimmonol. 2016; 179(1-2):173-179. 8. Martin J. Ferretti JJ, Stvens DL, Fischetti VA, editors. Streptococcus pyogenes: Basic Biology to Clinical Manifestations [Internet]. The Streptococcus pyogenes Carrier State. Oklahoma City (OK): University of Oklahoma Health Sciences Center. 2016. 9. Mell LK, Davis RL, Owens D. Association between streptococcal infection and obsessive-compulsive disorder, Tourette's syndrome, and tic disorder. Pediatrics. 2005; 116(1):56-60. 10. Murphy TK, Parker-Athill EC, Lewin AB, et al. Cefdinir for recent-onset pediatric neuropsychiatric disorders: A pilot randomized trial. J Child Adolesc Psychopharmacol. 2015; 25(1):57-64. 11. Murphy TK, Brennan EM, Johnco C, et al. A double-blind randomized placebo-controlled pilot study of azithromycin in youth with acute-onset obsessive-compulsive disorder. J Child Adolesc Psychopharmacol. 2017; 27(7):640-651. 12. Murphy TK, Snider LA, Mutch J, et al. Relationship of movements and behaviors to Group A Streptococcal infections in elementary school children. Bio Psychiatry. 2007; 61:279-284. 13. Orefici G, Cardona F, Cox CJ, et al. Ferretti JJ, Stvens DL, Fischetti VA, editors. Streptococcus pyogenes: Basic Biology to Clinical Manifestations [Internet]. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). Oklahoma City (OK): University of Oklahoma Health Sciences Center. 2016. 14. Sigra S, Hesselmark E, Bejerot S. Treatment of PANDAS and PANS: a systematic review. Neurosci Biobehav Rev. 2018; 86:51-65. 15. Thienemann M, Murphy T, Leckman J, et al. Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part I - Psychiatric and behavioral interventions. J Child Adolesc Psychopharmacol. 2017; 27(7):566-573.

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Focus On PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections

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In this article a clinical pharmacist and assistant professor of pharmacy practice reviews PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Authored by: CiCi Walker, Pharm.D., MPH, BCPS [Last updated 12 November 2018] Watching TV is not one of my regular activities, but every now and then something catches my attention.

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What is PANDAS, the disorder some doctors say can cause extreme behavioral changes in kids?

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Alexia Baier was an eager-to-learn, 4-year-old girl beginning pre-K in a suburb outside of Chicago. She thrived academically -- counting, painting and playing with other children.

But five months after starting pre-K, she was infected with a bacteria that several millions of people get every year, according to the Centers for Disease Control and Prevention. The bacteria, group A strep, caused Alexia to get strep throat, a condition children usually recover from easily with treatment.

After 10 days of antibiotics, the infection disappeared but so did Alexia's bubbly personality. Within two days after completing antibiotics, Alexia began showing behavioral changes at home and eventually at school. She suddenly became defiant and explosive.

"It was a lot of screaming, a lot of hitting and kicking adults," said school principal AJ McCree. "When we would try and keep her safe in an isolated area, she would continue to elevate and elevate."

Alexia's mother, Vanessa Baier, couldn't believe the shocking change.

"They had to call in the social worker, the psychologist, the principal. It was like a Tasmanian devil running through the classroom," she said.

Holding back tears, Baier said she wondered: "What am I doing wrong?"

It was a four-month-long emotional roller coaster dealing with the toll on the family's personal life and a lack of answers from the medical community until Alexia started threatening violence against others, including herself. She even attacked her mother.

(Vanessa Baier) Alexia Baier is seen here during a doctor's visit.

While Baier was driving, Alexia became violent toward her mother during a trip to get milkshakes. Baier said that Alexia began asking for a second milkshake. When Baier refused, she said, she heard Alexia unbuckle her seat belt.

"I pulled over and I turned to her. As I picked my head up, she was stabbing me in the eye with my mascara wand," Baier said.

Baier said that between the threat of self-harm and the increased violence she realized she needed to take extreme measures.

At 4 years old, Alexia was admitted to residential treatment. After nine days of observation, Baier wasn't convinced that Alexia was getting the help she needed. She said that the doctors' diagnosis of bipolar disorder didn't seem right to her and that Alexia was sent home with prescriptions for stimulant and antipsychotic medications that didn't seem to be working.

Baier said the medication made her daughter a zombie and she was still having explosive moments.

"I was not in denial. The only thing that I kept questioning is, 'But why did this suddenly come on? Wouldn't I have seen signs? Or does bipolar just ... come out of nowhere like this? And what about that strep?'" she said.

Eventually, a neuropsychologist connected the timing of the strep and immediate onset of behavioral symptoms.

Baier said that's when the doctor asked: "'OK, have you ever heard of PANDAS?' [I was] definitely relieved to have some sort of diagnosis that made sense."

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)

Some physicians believe PANDAS is the sudden onset of tics, Obsessive Compulsive Disorder-like behavior or other behavioral changes as a result of a streptococcal infection like strep throat. After a child gets strep throat, the immune system produces proteins, like antibodies, to protect itself.

However, some doctors think that in some cases, these antibodies may mistake its own immune system as foreign and actually attack the child's own body, including the brain, triggering inflammation as a result of the misguided immune response. They say this "autoimmune" attack causes neuropsychiatric changes in the child, presenting as behavioral changes, like OCD and tic disorders. There is a wide range and severity of symptoms, with Alexia's case on the more extreme end.

There is also the emergence of a broader umbrella term called Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), which includes not only PANDAS but also symptoms thought to be caused by non-strep infections or other inflammatory disturbances to the system.

These non-strep infections include bacteria and viruses like Lyme disease, mycoplasma pneumonia or walking pneumonia, herpes simplex viruses and the common cold, according to the National Institutes of Health.

The thought is that this whole set of conditions boils down to one presumed cause: an overly active immune response that is sudden in onset but looks like OCD or behavioral problems. It's no longer thought to be just about the strep. Experts caution, however, that many children will get strep and other infections with no resulting behavioral changes, while others experience behavioral changes without a prior infection.

Some doctors say the presentation of PANDAS is broad and can vary. The diagnosis requires two of the following symptoms, according to the National Institute of Mental Health: anxiety, emotional instability/depression, oppositional behavior like aggression, losing development in behavior, worsening of school performance, disabilities in sensory or motor capabilities as well as signs and symptoms like sleep or urinary problems or eating restrictions. A collaborative effort among different PANDAS researchers has resulted in this set of criteria.

Dr. Susan Swedo, senior investigator in pediatrics behavior and Chief of the Pediatrics and Developmental Neuroscience Branch with the National Institute of Health, has been studying PANDAS for decades and was the first, with her team, to identify PANDAS. Although she said the disorder is uncommon, she estimates it affects one in 200 or one in 500 children.

She also said that far too many of her fellow doctors don't think PANDAS is real.

"They dismiss it. We don't have an argument with people that think this exists and it might be rare. The argument is with people who are literally PANDAS deniers," she said.

There is controversy over whether the streptococcal infection of PANDAS is really what causes persistent behavioral changes. Some doctors believe the sequential onset of strep throat and these changes could be coincidental.

Dr. Donald Gilbert, professor of child neurology at the University of Cincinnati and the director of two clinics at Cincinnati's Children Medical Center, told ABC he believes "the majority of those who believe they have PANDAS just have regular OCD or regular old tics."

Gilbert said that even if PANDAS is a legitimate diagnosis, it is most likely extremely rare and overdiagnosed. He is not alone in those beliefs.

(ABC News) Dr. Susan Swedo of the National Institute of Mental Health first identified "PANDAS" as a behavior disorder in children 20 years ago.

Swedo acknowledged that some doctors may be over-treating but said on a whole the disorder is underdiagnosed countrywide. She said that's in part because of the number of fellow physicians who do not believe in the diagnosis of PANDAS. This makes it hard, she said, for families to find physicians willing to treat the condition.

However, some national medical organizations remain unconvinced that PANDAS is real, citing the lack of unduplicated or quality studies.

The American Academy of Pediatrics "Red Book," a guide used by many pediatricians for infectious diseases like streptococcus, contains its stance on PANDAS.

According to the AAP Red Book, the evidence for PANDAS has relied on only a small number of patients and the authors have concluded that there is not a specific enough relationship between group A strep and the neuropsychiatric disorders to suggest treatment with antibiotics or any other therapy.

The American Academy of Pediatrics suggests management not by pediatricians, but by specialists like child psychiatrists, behavioral and developmental pediatricians or child neurologists.

The AAP states that management of any specific symptoms of OCD and tic disorders should be left to the specialists. Although some researchers and clinicians believe that treatments including antibiotics and certain immunotherapy may help "children with symptoms suggestive of PANDAS or PANS", the AAP says there aren't enough studies to prove this yet.

Alexia Baier is awarded 'Student of the Month'

Today, Alexia is 8 and, her parents say, doing a lot better. After receiving the diagnosis of PANDAS from a neurologist three years ago, she was placed on different antibiotics for the streptococcus bacteria, took steroids and had her tonsils and adenoids removed.

She does have occasional flare-ups but they are quickly treated with antibiotics, according to the family. Alexia improved behaviorally and was even awarded "Student of the Month" out of her entire school. With the return to a sense of normalcy, the family decided to turn their scary experience into an opportunity for advocacy.

For Alexia and her family, their experience with PANDAS was enough for them to join the fight with other families to pressure Illinois to become the first and only state so far requiring insurance companies to financially support PANDAS treatment. The law was passed and signed into law in Illinois in July 2017.

Constant research continues and supporters of PANDAS hope that the policy, financial support and health-care stance on this issue will shift and improve along with understanding. They say this will require the collaborative work of both critics and supporters of PANDAS.
To learn more about PANDAS, click here for more information. ABC News' Neha Chaudhary contributed to this story.

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What is PANDAS, the disorder some doctors say can cause extreme behavioral changes in kids?

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Alexia Baier was an eager-to-learn, 4-year-old girl beginning pre-K in a suburb outside of Chicago. She thrived academically -- counting, painting and playing with other children. But five months after starting pre-K, she was infected with a bacteria that several millions of people get every year, according to the Centers for Disease Control and Prevention.

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A mother's fight to cure her son.

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1.Gamucci, A., et al. PANDAS and PANS: Clinical, Neuropsychological, and Biological Characterization of a Monocentric Series of Patients and Proposal for a Diagnostic Protocol. Journal of Child and Adolescent Psychopharmacology, 2018.

2.  Sigra, S., Hesselmark, E., Bejerot, S, Treatmnet of PANDAS and PANS:  systematic reveiew. Neuroscience and Biobehavioral Review, ²⁰¹⁸, 86, 51-65.

3. Focus On PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections. https://www.idstewardship.com/focus-pandas-pediatric-autoimmune-neuropsychiatric-disorders-associated-streptococcal-infections/ (accessed Mar 26, 2019).

4. Demesh, D., Virbalas, J.M., Bend, J. P. The Role of Tonsillectomy in the Treatment of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). JAMA Otolaryngology-Head and Neck Surgery, 2015, 141, 3.

5. PANDAS. https://www.nimh.nih.gov/health/publications/pandas/index.shtml

(accessed Mar 26, 2019).
6. PANDAS Network. http://pandasnetwork.org/ (accessed Mar 26, 2019).

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PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.

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PANDAS Network | Resources and Support for PANDAS/PANS

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PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.

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A family's fight for their son en route to NCAA tournament history.

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By 2015, when Connor was 13, Lucia was having trouble getting him to school because he was terrified of germs. He wouldn't let anyone come into their house. He wouldn't even let Lucia touch him.

"He didn't like people being close to him, talking to him, thinking he would get contaminated," Lucia said. "It morphed into germs that weren't real."

Lucia had come to the hard conclusion that her son had a serious mental illness.

"You know your child and you know something isn't right and you go to the doctor and you try to tell them this isn't right and they don't hear you," she said. "It'd be like someone telling Ryan how to coach a basketball team when they're not a basketball coach. People don't like to be questioned when it's their profession."

After going only 8-11 at the end of the 2015 season, Ryan and the entire UNC-Charlotte staff were let go.

"Probably the worst point in our life," Lucia said. "But it turned into a blessing because that, in turn, brought Ryan home."

Ryan knew Connor had been behaving oddly but didn't appreciate the severity of the situation.

"I've never had adversity like this," Ryan said. "To see your son struggling like he was and not be able to have the expertise or the ability to help -- it was a big mystery."

Connor said his rational brain knew the germs weren't real and wouldn't make him sick; but at the same time, he would still feel compelled to start washing all over again if he didn't wash them off in a certain way.

"So, I just kept giving in to the temptation to wash," he said. "And it made it worse."

Through audio and video recordings, Lucia documented how difficult it was for Connor to stop washing his hands or get out of the shower. In one audio clip, they have an exchange as she tries to get him out of the shower.
"I just want to go to school," Connor said. Lucia replies: "Then we need to go." Connor whimpers: "I can't! It's like I'm in jail. Like my mind is shackled and I don't have the key to get the shackles off!"
Connor said he could not think clearly: "My mind was blurry."
"It's like I'm being tortured!" Connor cries in another recording. "I don't want to disappoint anyone," Connor tells his mother when she urges him to get out of the shower. "But I just can't!"
"You know your child and you know something isn't right, and you go to the doctor and you try to tell them this isn't right and they don't hear you." Lucia Odom

Only basketball could lure Connor outside.

"That was the one thing, ironically, Connor could do," Ryan said. "He couldn't go to school, he couldn't do anything, but he could play basketball. We could talk him out of the shower and get him out of there to go play basketball."

But then came Connor's AAU tournament. "We were at nationals," Connor recalled. "I had a game and I was in the shower for three hours."

"He just couldn't get out of the shower," Ryan said. "We couldn't get him to the game."

Connor had brain scans; he met with psychiatrists, psychologists and therapists. Nothing worked.

"It was the hardest thing I think I've ever dealt with in my life, knowing I couldn't fix my son," Lucia said.

By that summer of 2015, doctors diagnosed Connor with severe Obsessive-Compulsive Disorder (OCD), which causes someone to repeat behaviors because of uncontrollable, reoccurring thoughts. Connor was terrified of germs. He couldn't stop thinking about them.

"It's like a washing machine," Ryan said. "That's all they can think about. It just goes over and over and over again. And what happened with Connor is he began to develop rituals," like washing his hands, "to deal with those thoughts."

None of the doctors they met with could explain why the OCD had set in or how to stop it.

Desperate to find answers, Lucia went to her local library to search for books about OCD.

"'Saving Sammy' was the only book they had, so I got it, went home and read it," she said. "Within the first five pages I just said, 'Oh my gosh, this is what's wrong with Connor!'"

In the book, Sammy's mother, Beth Alison Maloney, learns her son's OCD was caused by a previously undiagnosed strep infection. The Odoms decided to have Connor tested for strep and his numbers were through the roof, even though he didn't have a sore throat or other classic symptoms of strep.

Connor then was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus or what is commonly referred to as PANDAS. He began antibiotic treatment to kill the strep and moved to Nashville, Tennessee, with Lucia for intensive OCD therapy at Rogers Behavioral Health. Ryan moved into a small apartment in Hickory, North Carolina, after taking a job as head coach at Lenoir-Rhyne University, a small Division II school. Ryan's parents, Dave and Lynn, along with Lucia's mother, moved in with 12-year-old Owen so he could stay at his school in Charlotte.

It was the hardest year of their lives.

A new opportunity

LOCATED IN THE SUBURBS of Catonsville, Maryland, the University of Maryland-Baltimore County wasn't nearly as big or famous as its sister school 30 minutes down the road. The University of Maryland Terrapins won a national championship in 2002, and they regularly rank within the top 25. In comparison, the UMBC Retrievers had only one NCAA tournament appearance (2008) and had since endured a losing record every season.

When UMBC called Ryan to take over its men's basketball job in the spring of 2016, he told his family he might not get another chance at a Division I head-coaching job again.

"I didn't know what UMBC was, like a lot of other people didn't," Lucia said. "I didn't know what to think. They're not known for their basketball, but I've always had confidence in Ryan. He just needed a chance."

So, just months after the family finally reunited in Charlotte, everyone packed up and moved to Maryland. Connor and Owen started at a new school, and they built a small basketball court in the backyard. Ryan quickly turned his new team around, helping the Retrievers win 21 games, three-times as much as their previous season.

But just as Ryan began his second season with UMBC, Connor's issues resurfaced in October 2017.

"The showers just progressively went from five minutes to 10 minutes to 15 minutes," Connor said. "I was so embarrassed. I didn't want to tell my parents I was getting sick again until, finally, they could just tell."

His doctors were perplexed. The strep was gone, so why had the OCD returned?

As Connor and Lucia headed back to Nashville for another round of intensive therapy, Ryan made the decision to tell his players about his family's troubles.

"I didn't want to hide that from them," Ryan said. "They need to see their coach be torn up a little bit about what's happening. No different than I need to understand that they're going to go through some things and I'm going to have to help them when they're at their worst."

The team rallied behind its coach.

"We were there for him," UMBC guard Jairus Lyles said. "The fact we were good and we were winning games, that kind of took the stress off too."

The Retrievers were not only winning. They went on to clinch the 2018 America East Conference championship. They were headed to the NCAA tournament.

History on the court, and answers off of it

UMBC FORWARD GUARD Joe Sherburne vividly remembers Ryan's locker room ahead of the Retrievers' first-round game in Charlotte on March 16, 2018. UMBC, the 16-seed, was about to face off against the top-seeded Virginia Cavaliers, a team many experts predicted would win the whole tournament.

"He was talking about what he had been through, why he wanted us to win so much," Sherburne said. "That he had been living in Charlotte right down the street [from the arena]. Out of a job. What he had been through with his family."

Ryan was about to face his favorite childhood team in the same town on the same home court he had been fired from on the exact same day three years earlier.

"You couldn't write the script," Ryan's father said of the matchup. "You couldn't write that as a movie."

And sitting in the stands was 16-year-old Connor, who had just returned from two months of therapy. As Sherburne listened to his coach, he remembers thinking, "We really wanted to win for him. That was a big motivation for us."

By halftime, the game was tied at 21. But when the Retrievers returned to the court, they began firing off an unstoppable barrage of 3-point shots. Virginia, renowned for its vaunted defense, couldn't shut it down.

"We're a team that gets up and down and shoots 3s," Sherburne said. "When you're a small team who's playing a No. 1 team in the country, you've got to be able to make 3s."

UMBC went on to win 74-54, the first time in tournament history that a 16-seed ousted a No. 1 seed.

But the Cinderella story lasted just one round, on and off the court. UMBC lost its next game against Kansas State, and Connor spiraled again a few days later.

The Odoms resumed their search for a physician who could explain why the OCD kept returning and finally found veteran neurologist Dr. Rosario Trifiletti, who suspected strep might not be the only culprit behind Connor's condition and ordered more extensive blood work.

"It's as if you caught a mental illness," Trifiletti said. "Most children react to infections like a strep throat by getting a fever and feeling ill. But a small percentage of kids react differently and have a sudden behavioral change and develop these characteristics of OCD."

Trifiletti added that PANDAS is still an emerging diagnosis and there is debate within the medical community about its cause and how to treat it. But Trifiletti believes any infection that can spike a fever can cause PANDAS in a child who is susceptible to it, which is why some doctors are now starting to refer to it simply as PANS, which is short for Pediatric Acute-onset Neuropsychiatric Syndrome.

"In Connor, indeed, we found lots of things going on, and we realized there were a lot of infections to treat," Trifiletti said.

One of the factors was Lyme disease, which the Odoms believe has been in Connor's system since he was 18 months old.

"He woke up one morning and half his face wasn't moving," Lucia said. "We went to a specialist to try and figure out what it was and they said Bell's palsy. We treated him for 30 days with a steroid and it went away."

But it hadn't, really. His parents believe the Lyme disease had been lurking in Connor's bloodstream for more than a decade, triggering his OCD along with the strep when he hit puberty.

"This is why nothing worked," Lucia said. Trifiletti "figured out the missing piece."

"Finally, I have an answer," Connor said of his diagnosis. "I know that my worries are caused, ironically, from germs, but at least I know that I'm not crazy and worrying about nothing."

Connor said the hard reality of OCD is that once it sets in, it can be very difficult to control. Even though he quickly started an aggressive regimen of medication and supplements to fight the Lyme disease, the Odoms just assumed they were headed to Nashville again.

Except, this time, "Connor fought it on his own," Ryan said. "That's the first time I've seen him do that. I was so proud of him."

For Ryan, leading his UMBC team to that historic upset a year ago was nothing compared to Connor's battle with OCD.

"Without a doubt. What we did at UMBC is an upset for the ages -- for now, until somebody else does it. There are always upsets," Ryan said. "When you see your child overcome something this traumatic and this hard, it takes a special person to do that."

After missing two years of school, Connor is now taking accelerated classes at Oak Hill Academy, a legendary basketball boarding school located in the mountains of southern Virginia where former alums include Jerry Stackhouse, Carmelo Anthony and Rajon Rondo.

Several of Connor's teammates are at least a foot taller than him, including his roommate, whose side of the room looks as perfectly disheveled as one would expect from a 17-year-old. Connor's side, however, is immaculate. Connor might never shake the need to keep everything clean and organized, Trifiletti said; he might have future relapses. But the fact that Connor can now walk into the boy's locker room barefoot and pick through a mound of dirty laundry in search of his shoes, the doctor said, "is incredible."

When asked if Connor is at Oak Hill training up to be the next Coach Odom, his grandfather sported a knowing grin.

"There were some really dark days, but there is great balance in life," he replied. "And basketball was the Odom family's anchor. It has kept us afloat."
Reporter Tisha Thompson and producer Arty Berko work for ESPN's Enterprise and Investigative units.

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A family's fight for their son en route to NCAA tournament history

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One year ago, coach Ryan Odom led the UMBC Retrievers to the most shocking upset in NCAA tournament history. But off the court, he and his family were simultaneously fighting to solve a medical mystery that ailed their teenage son.