PANDAS: a proposed new diagnosis for children and adolescents who may suddenly develop symptoms of Obsessive Compulsive Disorder (OCD) and/or tic disorder after having a strep infection. Or, if they already had OCD and/or tic disorder symptoms, these symptoms worsened significantly following a strep infection.
PANDAS diagnostic criteria have been around for over ten years (de Oliveira, 2007), but the condition itself is still in the hypothesis stage (Mittelman, 2012). In spite of its newness, there is a PANDAS Network with information regarding the condition and a list of professionals conducting research into PANDAS. This may be an indication of the power of the internet and the amount of media attention given to this proposed condition. It certainly points out the speed with which information is spread. Before this grouping of symptoms even is recognized as a diagnosable condition, parents can be armed with a great deal of information, not all of which is backed by scientific research, and can begin the process of forming a community of sorts. That is not to cast blame on parents for doing this; rather, those whose children suffer from these symptoms are doing what they feel is justified to bring professional attention to their plight.
When children suffer from any kind of psychiatric disorder, they may experience the symptoms more acutely than adults. Primarily this is due to not having a developed cognitive or emotional system that helps them deal with the symptoms. Parents of children with psychiatric disorders also suffer. Much of the time, there is a lot of questioning about why this happened to their child or what they did to cause this problem.
If the symptoms experienced by the child come on quickly, almost overnight, the suffering of both child and parents is increased. But that is the case with this possible new condition.
Initial research at the National Institute of Mental Health (Swedo, et al., 1998) investigated children with abrupt onset OCD symptoms. These cases were considered unusual because the onset of OCD symptoms in children typically occurs slowly. Other neuropsychiatric symptoms were co-occurring with the OCD.
In 2007, an article (de Oliveira, 2007) published in a Brazilian pediatric journal reviewed scientific literature on PANDAS for the period 1989-2006. This article called for more research to determine whether the condition was a new disease.
Currently, research is being conducted at institutions like the University of Oklahoma Health Sciences Center, the University of South Florida, the University of Missouri, and the School of Biological Sciences at UC Irvine, as well as Massachusetts General Hospital. PANDAS may be an important new diagnosis in children’s mental health.
Even though PANDAS is not formally classified as a diagnosable disease entity, there is a significant symptom picture that is being considered. Chief among the symptoms is the sudden onset of Obsessive Compulsive Disorder (OCD) symptoms that may reach a serious level. In fact, a child with this abrupt beginning of symptoms may quickly progress from being asymptomatic to being practically incapacitated by the symptoms (Mittelman, 2012). Along with the OCD symptoms there may be related tic disorder symptoms, as well.
Other associated neuropsychiatric symptoms that may be seen with this proposed new disorder are:
- severely restricted food intake
- sensitivity to sensory input, either sounds, light, or touch
- deteriorating handwriting
- deteriorating small motor skills
- inability to focus, loss of attention, distractible
- anxiety or panic attacks with sudden onset
- separation anxiety
- sleep disturbance
All of these associated symptoms may have the same sudden onset as the OCD symptoms. The unique set of these symptoms always includes the ones typical of OCD.
Children who suffer from “typical” OCD and/or tic disorder have a relatively straightforward course of the disorder. Not so with children suffering from PANDAS. In addition to the recent episode of strep throat these children have, and the sudden onset of symptoms, these children go through a slow, gradual improvement (National Institute of Mental Health, n.d.). Their course of severe symptoms may last weeks, months, or longer. And if they experience another strep infection, the symptoms dramatically worsen again, possibly overnight.
What Causes PANDAS?
Because the symptoms of PANDAS show up very quickly following a strep infection, there appears to be a significant possibility that autoimmune responses triggered naturally by the body in response to the infection are causative factors. In any infection, antibodies are produced to fight the infection.
Infections such as Rheumatic Fever (RF) trigger the development of these antibodies, which sometimes attack other parts of a child’s body by mistake. This results in problems with the child’s heart valves, joints, and parts of the brain. The reason this happens is the bacteria that cause RF are similar to the proteins in the cells of the heart valves, joints, and some areas of the brain (National Institute of Mental Health, n.d.). It is theorized that a similar event occurs in the case of sudden onset OCD symptoms following a strep infection. The child’s naturally produced antibodies attack parts of the brain, possibly the basal ganglia, by mistake and bring on the OCD and other symptoms.
At present, there is no specific procedure for diagnosing PANDAS. A thorough history and physical examination is utilized, covering the following criteria (Perlstein & Dryden-Edwards, 2014):
- presence of symptoms of OCD and/or tic disorder, ADHD or oppositional disorder
- abrupt onset or symptoms varying in intensity
- associated with other neurological symptoms, such as hyperactivity or choreiform movements, and other neuropsychiatric symptoms
- age of onset from 3 years to puberty
- associated with group A beta-hemolytic streptococcal infection, shown by culture or evidence of infection
Of these criteria, the OCD symptoms and strep infection must be verified and the OCD symptoms must include sudden onset.
At present, the treatment regimen for children with PANDAS is the same as for children with typical OCD. That is, cognitive behavior therapy and/or and SSRI medication such as fluoxetine appear to be the best treatment (National Institute of Mental Health, n.d.). Since it takes time for this treatment to work, it is best to begin the treatment as soon as possible. It is important to keep in mind that children may be very sensitive to the side effects of SSRIs. Thus, the admonition to “start low and go slow” is to be kept in mind. Beginning treatment with a low dose of the medication and slowly increasing it will keep the side effects as low as possible.
Of course, treatment with appropriate antibiotics should be undertaken if there is an active strep throat infection present. For children who already suffer from PANDAS, there is some evidence that antibiotics could play a role in preventing further strep infections and thus prevent the worsening of the child’s symptoms (Perlstein & Dryden-Edwards, 2014). More research is needed before this course of treatment will be considered truly effective.
A New Direction
Investigation into PANDAS has led to a newer line of thought regarding rapid-onset OCD symptoms (Mittelman, 2012). A broader category called PANS, Pediatric Acute-onset Neuropsychiatric Symptoms, is being investigated.
This broader diagnosis has been suggested due to diagnostic difficulties with PANDAS. The initial research interest in PANDAS required strep infection to be recent to the onset of symptoms. However, the prevalence of these types of infections in school-age children and the sometimes asymptomatic cases of strep led to problems with diagnosis of PANDAS (Chang, et al., 2014). Also, the problems with tic disorder diagnoses and course of this part of the disorder led to increasing controversy over the diagnosis.
Thus in 2010, a group of experts met at the National Institutes of Health and began working on diagnostic criteria for PANS. This meeting and subsequent research has led to PANS criteria that appear to address the diagnostic problems associated with PANDAS. PANS will entail a diagnosis of exclusion, that is, other known diagnoses must be ruled out before making the diagnosis of PANS (Chang, et al., 2014).
The criteria for making the diagnosis of PANS must include the following (Chang, et al., 2014):
- abrupt and dramatic onset of OCD or severely restricted food intake
- co-morbid presence of at least two of the following
- emotional lability and/or depression
- irritability, aggression, and/or severe oppositional behavior
- developmental regression
- deterioration of school performance
- sensory or motor abnormalities
- somatic signs and symptoms, such as enuresis and sleep problems
- symptoms are not better explained by known medical/neurological disorder
Children who suffer from PANS may become severely ill. Compulsive behaviors may become extreme, tic behaviors may increase, developmental regression may become more noticeable, and anxiety and aggression can become terrifying.
There still are no specific tests to perform to discover the existence of PANS. Evaluation consists of thorough family and medical workups. The evaluation will be unique to the individual child. At this time, early in the research into PANS, the requirement for a recent strep infection has been taken out of the diagnostic criteria.
Currently, there are still no specifically recommended treatment considerations for PANS. The same regimen as suggested for PANDAS has been utilized. That is, cognitive behavioral therapy and SSRI medications.
Whether either PANDAS or PANS will ever rise to the level of diagnosable conditions is yet to be seen. Clearly, more rigorous scientific research is needed to make this determination. It also seems clear there is a group of children and adolescents who develop severe symptoms rapidly and who are in need of adequate and appropriate treatment.
Will these children and adolescents grow up to be adults with either very aggressive OCD symptoms or possibly even untreatable conditions? That is unknown. Again, rigorous research is needed here, as well.
One thing is certain: potential links between common childhood illnesses and lifelong psychiatric conditions is an area ripe for study. Whether this pattern of symptoms known as PANDAS, that known as PANS, or another group of symptoms will ultimately provide that link is likewise unknown. Professionals are finding more and more about the complexity of the human body and the multiple ways symptoms can present in both children and adults.
We are, at the foundation of all of us, wonderfully and fearfully made.
Chang, K., et al. (2014). Clinical evaluation of youth with pediatric acute onset neuropsychiatric syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. Journal of Child and Adolescent Psychopharmacology. doi: 10.1089/cap.2014.0084.
De Oliveira, S.K.F., et al. (2007). PANDAS: a new disease? J Pediatr (Rio J). 83(3):201-208.
Mittelman, A. (2012). PANDAS. Retrieved from https://mghocd.org/ocd_pandas/
Murphy, T.K., Kurlan, R., & Leckman, J. (2010). The immunobiology of Tourette’s disorder, pediatric autoimmune neuropsychiatric disorders associated with Streptococcus, and related disorders: a way forward. J Child Adolesc Psychopharmacol. 20(4):317-331.
National Institute of Mental Health. (n.d.). PANDAS: frequently asked questions about pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Retrieved from http://www.nimh.nih.gov/health/publications/pandas/index.shtml.
Perlstein, D. & Dryden-Edwards, R. (2014). PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Retrieved from http://www.medicinenet.com/script/main/art.asp?articlekey=174842.
Swedo, S.E., et al., (1998). Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: Clinical description of the first 50 cases. American Journal of Psychiatry. 155(2): 264-271.