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National Institute of Mental Health

PANDAS is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette’s Syndrome, and in whom symptoms worsen following strep.  Infections  such as “strep Throat” or Scarlet Fever.

PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections.

Children with PANDAS/PANS usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by an infection. 

In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea. 

At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance. 

Association with streptococcal infection. 

At initial onset, the symptoms may have followed an asymptomatic (and therefore untreated) streptococcal infection by several months or longer, so the inciting strep infection may have gone unnoticed. However, on subsequent infection recurrences, the worsening of the neuropsychiatric symptoms may be the first sign of an occult ("hidden") strep infection. Prompt treatment of the strep infection is often effective in reducing the OCD and other neuropsychiatric symptoms. 

Strep throat infections can only be diagnosed by obtaining a throat culture that yields Group A beta-hemolytic streptococcal bacteria. In order to have a reliable throat culture, the swab must reach the oropharynx (the top back part of the throat) which typically is slightly uncomfortable and makes the child gag. A throat culture swab that only touches the back of the tongue will give a falsely negative result, as will one that is just touched to the sides of the throat. Poorly done throat cultures are a common cause of false negative results. Rapid strep tests can also give falsely negative results, as they miss about 10-15% of cases of strep throat. If the rapid strep test is negative, an overnight culture should be done to make sure that there aren’t strep bacteria present. 

Anti-streptococcal titers can also be used to diagnose a strep throat, but require that two separate blood tests are done several weeks apart and timed just right to show a “rising titer.” Strep infections trigger the production of anti-streptococcal antibodies, which are measured by the titers. When the child is initially infected with the strep bacteria, his titers will be low, but should increase over the next 4-6 weeks as more anti-streptococcal antibodies are produced. If the child’s blood is tested too late, the titers may already be elevated, but it won’t be possible to know if these “high titers” are related to the current difficulties, or if they’re left over from a previous strep infection, since titers can remain elevated for several months or longer. Thus, a single “high anti-streptococcal antibody titer” isn’t sufficient to prove that a strep infection was the trigger for the child’s symptoms. 

Recognizing and Diagnosing PANS – Pediatric Acute-onset Neuropsychiatric Syndrome 

Because it is often difficult to demonstrate the relationship between strep infections and OCD/tic symptoms in PANDAS, clinicians and researchers met at NIH in July 2010 to discuss changes to the diagnostic criteria that would facilitate more rapid diagnosis and treatment of affected children. The meeting participants agreed that attention should be focused on the unique features of the children’s clinical presentation, rather than on the role that strep infections might play. To accomplish this goal, the PANDAS criteria were modified to describe PANS – Pediatric Acute-onset Neuropsychiatric Syndrome. PANS encompasses the whole group of acute-onset cases of OCD while PANDAS describes those cases of PANS that have a documented association with streptococcal infections. PANS and PANDAS are comparable to cancer and leukemia (respectively) as PANS is the large class of disorders and PANDAS is one specific type. The diagnosis of PANS is made entirely on the basis of the history and physical examination. 

The diagnostic criteria for PANS are as follows:

1) Abrupt, dramatic onset of obsessive-compulsive disorder (including severely restricted food intake) 

2) Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:
Anxiety (particularly, separation anxiety)
Emotional lability (extreme mood swings) and/or depression
Irritability, aggression and/or severely oppositional behaviors
Behavioral (developmental) regression (examples, talking baby talk, throwing temper tantrums, etc)
Deterioration in school performance
Sensory or motor abnormalities
Somatic signs and symptoms, including sleep disturbances, bedwetting or urinary frequency.

Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder, or others.

NOTE: The diagnostic work-up of patients suspected of PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which might include MRI scan, lumbar puncture or electroencephalogram (EEG) in some cases. More often, laboratory studies will be warranted and should include tests to determine if there is a current infection or ongoing immunologic dysfunction. 

TREATMENT OF PANDAS (AND PANS) 

Since PANS is newly described, there have been no treatment trials performed to demonstrate which interventions will be effective. If the diagnostic work-up of PANS reveals an infectious trigger, treatment of the infection may be useful in reducing symptom severity of the OCD and other neuropsychiatric symptoms. The following treatment information is directed at PANDAS, since that is where the research has been done, but may prove useful for PANS, as well. 

Symptomatic Treatment

Children with PANDAS-related obsessive-compulsive symptoms will benefit from cognitive behavioral therapy (CBT) and/or anti-obsessional medications. Studies show that the best results are produced from the combination of CBT and an SSRI medication (such as fluoxetine, fluvoxamine, sertaline, or paroxetine). Children with PANDAS appear to be unusually sensitive to the side-effects of SSRIs and other medications, so it is important to “START LOW AND GO SLOW!!” when using these medications. Clinicians should prescribe a very small starting dose of the medication and increase it slowly enough that the child experiences as few side-effects as possible. If symptoms worsen, the dosage should be decreased promptly. However, SSRIs and other medications should not be stopped abruptly, as that could also cause difficulties. 

Treatment with Antibiotics

The best treatment for acute episodes of PANDAS is to eradicate the strep infection causing the symptoms (if it is still present). A throat culture should be done to document the presence of strep bacteria in the throat (oropharynx). If the throat culture is positive, a single course of antibiotics will usually get rid of the strep infection and allow the PANDAS symptoms to subside. Amoxicillin, penicillin, azithromycin, and cephalosporins are examples of antibiotics commonly used to treat strep infections. Toothbrushes should be sterilized or replaced during/following the antibiotics treatment, to make sure that the child isn’t re-infected with strep. It might also be helpful to check throat cultures on the child’s family members to make sure that none are “strep carriers” who could serve as a source of strep bacteria. 

If a properly obtained throat culture is negative, the clinician should make sure that the child doesn’t have an occult strep infection, such as a sinus infection (often caused by strep bacteria) or strep bacteria infecting the anus, vagina, or urethral opening of the penis. Although the latter infections are rare, they have been reported to trigger PANDAS symptoms in some patients and can be particularly problematic, because they will linger for longer periods of time and continue to provoke the production of cross-reactive antibodies. The strep bacteria can be harder to eradicate in the sinuses and other sites, so the course of antibiotic treatment may need to be longer than that used for strep throat. 

Some clinicians have advocated using antibiotics to treat acute symptoms of PANDAS, even when no strep infection can be found. They have observed significant improvement in the OCD and other neuropsychiatric symptoms following treatment with amoxicillin, azithromycin, and particularly with augmentin and other beta-lactam antibiotics. These case reports need to be confirmed by a controlled treatment trial before we can recommend use of antibiotics in the treatment of PANDAS.  

Immune-based Treatments

Immune-based therapies include plasmapheresis, intravenous immunoglobulin (IVIG) and corticosteroids (such as prednisone). A trial at NIMH tested plasmapheresis, IVIG, and sham IVIG (placebo) and found that both active treatments reduced symptoms significantly more than the placebo infusions. Not only were symptoms markedly improved at 1 month (40% on average for IVIG and 60% for plasmapheresis), but the treatment gains were maintained long-term. (All patients received antibiotics prophylaxis to prevent future strep infections.)

A separate study conducted at NIMH suggests that the benefits of plasma exchange (plasmapheresis) and IVIG are specific to PANDAS-related symptoms. A group of children with non-PANDAS obsessive-compulsive symptoms had no improvement when treated with plasmapheresis using the same protocol that had been used so successfully for the PANDAS patients. Thus, the immune-based therapies should be used only in cases where it is clear that the neuropsychiatric symptoms are related to an autoimmune response (as in PANDAS and many cases of PANS). In addition to ensuring that the child’s symptoms fully meet the PANS or PANDAS criteria, the clinician may utilize laboratory tests to confirm the immune dysfunction. Among others, such testing might include anti-streptococcal antibody titers, anti-nuclear antibody titers, and a test of immune reactivity, such as an erythrocyte sedimentation rate (ESR) or C-reactive protein.

There is some disagreement about the utility of corticosteroids (like prednisone) in the treatment of PANDAS. Clinicians have reported improvement of OCD severity in conjunction with administration of steroids. However, there are also reports of steroids causing tics to worsen. Another difficulty with treating PANDAS patients with steroids is that they can only be used for a short period of time (to avoid serious long-term complications). Symptoms may have improved during the steroid administration, but will return after the steroids are stopped, often rebounding to a level that’s even worse than before treatment was started. For this reason, steroids are not routinely recommended in the treatment of PANDAS. However, they may help the child’s physician decide if IVIG or plasmapheresis treatment will be helpful, since a “steroid response” is a good indicator that the immune-based therapies will be of benefit. 

Prevention of Future Episodes of PANDAS

To avoid future episodes of PANDAS, it may be helpful to use antibiotics as prophylaxis (prevention) against strep infections. Prophylactic antibiotics have proven to be quite beneficial to patients with rheumatic fever and Sydenham chorea. Two small clinical trials of prophylactic antibiotics in PANDAS showed that when antibiotics were effective in preventing strep infections, they also reduced the rate of recurrent episodes of PANDAS. 

It is important to note that the number of patients studied at NIMH is too small to provide definitive support for the use of prophylactic antibiotics in PANDAS. Thus, clinicians must decide whether they are appropriate for their patients, based on consideration of the known risks of antibiotic administration (potential for allergic reactions, secondary yeast infections, etc.) as well as the potential benefits of preventing strep infections. If the decision is made to use prophylactic antibiotics, clinicians should follow the guidelines established for rheumatic fever patients.http://intramural.nimh.nih.gov/pdn/web.htmhttp://www.ocfoundation.org/uploadedFiles/WhatYouNeed_09(1).pdfhttp://www.minddisorders.com/Py-Z/Tic-disorders.htmlshapeimage_12_link_0shapeimage_12_link_1shapeimage_12_link_2
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What is PANDAS/PANS?

PANDAS is a pediatric disorder strictly associated with Strep A infections. PANS is the same disorder when the triggers are either unknown, or are associated with other illnesses like Mono, Mycoplasma, H1N1, Lyme, Coxsackie B, Varicella (chickenpox) or Flu. Both disorders require a clinical diagnosis.

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Infection Triggered Neuropsychiatric Disorders In Children

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"The whole area of mental illness caused by infections is being looked at more closely because of PANDAS. If you can prevent lifelong suffering by using antibiotics or some acute intervention, that would be huge."

Dr. Michael A. Jenike,

  Harvard Medical School