There are children for whom we see signs that they are anxious or unhappy or beginning to suffer emotionally or behaviorally. We try to get help for our children when these struggles become larger or begin to interfere more. Children affected by PANS/PANDAS, however, develop mental health symptoms literally overnight after being sick. These are not kids who were always a little timid then seemed to get more anxious once they started school; Not kids who latched onto routines that eventually evolved into more elaborate rituals that have to be done a precise way. These are kids who were anxiety, OCD and behavior problem free until getting sick one day, and then show full blown anxiety, OCD, or behavior problems that were not present prior to getting sick. Parents are often at a loss to explain what is happening and feel that all of a sudden they have a completely different child.
Strep is the most common illness that those who have heard of PANS or PANDAS think of, but there are more illnesses besides strep that can trigger these reactions. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. This is the condition associated with strep. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. PANS can be caused by other forms of infection and metabolic issues. The common thread is that both are autoimmune and cause inflammation in the brain (encephalitis). This means that the antibodies that normally attack illnesses within our body attack our own body instead, and with PANS and PANDAS the area attacked is in the brain (basal ganglia). When the basal ganglia portion of the brain is impacted it affects a child’s thoughts, feelings and behavior.
Treatment for PANS/PANDAS generally involves blood tests (to diagnose the infection), antibiotics or other medicines for fighting infections (sometimes a long course), anti-inflammatory medicine (to reduce the swelling in the affected brain areas), and cognitive-behavioral or behavioral therapy (to address the emotional and behavioral symptoms as they do not tend to resolve with medical treatment alone). People are often understandably skeptical when they are told their child has a condition they have never heard of before. And can also be skeptical of the treatments that are recommended, that often require heavy rounds of medication. If we think about this as an attack on the brain, with our brain being the basis of our behavior, it helps us understand that to effectively treat it we need both medicine and behavioral treatment approaches.
For the medical treatment portion of your child’s care it is best to find a pediatric specialist who has extensive experience treating children with PANS and PANDAS. For the mental health portion many therapists who specialize in treating OCD also have experience working with children with PANS and PANDAS. Even if the child is presenting with symptoms that differ from OCD starting by talking to a therapist with extensive OCD experience can be a good first step if you are having trouble locating someone that treats PANS or PANDAS.
The sudden onset mental health symptoms are treated with cognitive-behavioral or behavioral therapies that target the specific symptoms with which that child is presenting. Behavioral and emotional symptoms triggered by PANS/PANDAS can include but are not limited to (taken from https://iocdf.org/pandas/):
- Acute sudden onset of OCD
- Challenges with eating, and at the extreme end, anorexia
- Sensory issues such as sensitivity to clothes, sound, and light
- Handwriting noticeably deteriorates
- Urinary frequency or bedwetting
- Small motor skills deteriorate – a craft project from yesterday is now impossible to complete (see images below)
- Inattentive, distractible, unable to focus and has difficulties with memory
- Overnight onset of anxiety or panic attacks over things that were no big deal a few days ago, such as thunderstorms or bugs
- Suddenly unable to separate from their caregiver, or to sleep alone
- Screaming for hours on end
- Fear of germs and other more traditional-looking OCD symptoms
When the presentation involves Anxiety or OCD a form of CBT called exposure therapy is used to treat it. The form of exposure therapy used to treat OCD is called Exposure and Response Prevention (ERP). For tics and body-focused repetitive behaviors a form of behavioral treatment called Habit Reversal Training (HRT) is used. If problem behaviors are the main presentation behavioral treatments that heavily involve the caregivers such as Parent-Child Interaction Therapy (PCIT) or other forms of Parent Management Training (PMT) can be used.
Despite thorough treatment of symptoms children can have a recurrence of symptoms after getting sick again, which is called a flare (like a flare-up). Children often need another round of medical and sometimes a booster of behavioral treatment when they are having a flare.
You and your child are not alone. There is help out there for these sudden onset mental health struggles. Here are more resources.
Book For Parents:
- Childhood Interrupted: The Complete Guide to PANDAS and PANS by Beth Alison Maloney
- PANDAS Network- http://pandasnetwork.org/medical-information/
- PANSPANDAS-Hope http://panspandas-hope.com/
- International OCD Foundation (IOCDF): https://iocdf.org/pandas/
Referrals for Medical and Behavioral specialists can be found at:
- PANDAS Network: http://pandasnetwork.org/us-providers/
- PANDAS Physicians Network: https://www.pandasppn.org/practitioners/
Children’s books that can help parents and professionals talk about PANS and PANDAS with children who are affected by it:
- In a Pickle Over PANDAS by Melanie S. Weiss, R.N.
- My Story About PANS/PANDAS by Owen Ross
- PANS/PANDAS: Strength-Hope-Understanding: A Picture Book for Children, Family, & Educators by Suzanne Gushansky