PANS/PANDAS seems to be getting more attention lately. I have seen quite a few of these cases, with some similarities and many differences in presentation. Although I’m certainly no expert, I’d like to provide some answers to FAQs and additional resources for learning.
What is PANS/PANDAS?
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, while PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Rolls off the tongue, huh? The simplest definition of these syndromes is a subset of children who have a strep, viral, or other infection and then have a rapid onset of changes in emotions and behaviors. There is not one distinct PANS/PANDAS presentation.
I have often seen a combination of obsessive-compulsive symptoms (rituals, compulsive behaviors) plus “rage” (as described by caregivers: intense tantrums, aggression). These symptoms seem to pop up out of nowhere and decrease in intensity after the illness has subsided. Other common PANS/PANDAS symptoms include brain fog, learning problems, tics, separation anxiety, and eating disorder symptoms.
The symptoms seem to follow a cyclical pattern, referred to as “flares.” When the child gets sick again, the behavioral and emotional symptoms can return.
Is PANS/PANDAS real?
This question gets asked because medical doctors will dismiss these syndromes. Doctors might say that they “don’t believe in” PANS/PANDAS, as if we are discussing Rudolph the Red Nosed Reindeer. PANS/PANDAS is simply a name for a set of symptoms that many caregivers have described in their children. There are certainly many reputable medical doctors and facilities that are researching these symptoms and their treatment.
What is the medical treatment for PANS/PANDAS?
There are a variety of medical treatments for PANS/PANDAS, ranging from a regimen of anti-inflammatories to a round of antibiotics to intravenous immunoglobin (IVIG). Of course, it is beyond my scope to discuss the usage of these treatments. Caregivers should consult with a medical professional who has experience with PANS/PANDAS.
Would these symptoms have ever started if my child didn’t have strep?
That is the unanswerable question! There is some thought that these kids are genetically predisposed to OCD and related disorders and that they would have developed these symptoms eventually, but in a more typical, gradual progression.
What is the psychology treatment for PANS/PANDAS?
It depends! When I work with kids and families dealing with PANS/PANDAS, I have to look at the individual symptoms just like I would with anyone. We might treat the tantrums/aggression, obsessive-compulsive symptoms, or something else with the typical evidence-based treatment for that disorder. For example, I have used Parent-Child Interaction Therapy (PCIT) for the behavioral concerns and Exposure and Response Prevention (ERP) for the OCD symptoms.
How do I find a therapist familiar with PANS/PANDAS?
To find a therapist familiar with PANS/PANDAS, your best bet is likely to get a referral from a professional familiar with these syndromes. Many mental health professionals who are specialists in child OCD have experience with PANS/PANDAS.
Does my child need to continue therapy once they are out of their flare?
I have often had families drop out of treatment when their child is out of their flare. It makes sense, because everything is better, and maybe this was just a random blip. Unfortunately, I have to compare this to taking only 3/5 days of your antibiotic medication. When families have needed to return, they are in crisis again and cannot rely on pre-existing therapy skills because they did not learn the full skill set. So, we’re nearly starting from scratch while in an extreme crisis mode. I highly recommend finishing the full course of therapy, even if the symptoms have resolved, so that skills are absorbed to be used in future flares. These syndromes do have a cyclical pattern, and so it is reasonable to expect the symptoms to return.
Is there hope for my child?
Absolutely! Although dealing with PANS/PANDAS in the first couple of flares can be really upsetting and challenging, I have seen kids and families return to normal lives after finding a combination of treatments that works for them.
Resources
I am happy to be a resource for families coping with PANS/PANDAS and can see families in Georgia and PSYPACT-authorized states.
Comments