Have you heard of PANDAS? I've been hearing about it more and more between friends and colleagues, and sadly seeing it on the rise as yet another pediatric diagnosis. I can think of at least 4 of my friends' children living with it, fighting it, and overwhelmed by it right as we speak. Their parents' descriptions of day to day struggles include extreme meltdowns, OCD and Tic behaviors, aggressive and threatening behaviors toward family members, severe anxiety, anger, and resistance toward normal daily routine activities like going to school, participating in social events, or leaving the house. Most of my friends express major concern with how quickly things escalate, how unnerving it can be, and how they often feel afraid for other family members' safety due to the sudden increase in aggressive, angry behaviors. One parent told of a time her son threatened her with a knife, and later expressed wanting to kill himself. The behaviors are not something to take lightly, are very concerning, and should be cause for alarm. As a parent, I can't even imagine the fear, exhaustion, and overwhelm the families must be experiencing. I hope to help bring more awareness and light to the subject, and pray for there to be more treatment options to help these families as soon as possible.
What is PANDAS?
According to the National Institute of Mental Health, "PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
A child may be diagnosed with PANDAS when:
Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or the symptoms of OCD or tic symptoms suddenly become worse following a strep infection."
Paulo R. Pina, MD, MPH, (on MedicineNet) describes the cause of PANDAS further:
"Streptococcus is known to be associated with a number of immune-related disorders, including rheumatic fever, scarlet fever, and acute glomerulonephritis (a kidney disorder). The strep molecules are known to hide from the host immune system by mimicking host cells. Ultimately, the immune system recognizes the foreign cells, and the antibodies produced attack the bacterium, and unfortunately, some of the host's own cells are attacked as well due to cross-reactivity. In some situations, these antibodies attack brain cells, causing OCD, tics, and the other symptoms frequently observed in PANDAS patients."
Although medical and mental health professionals are now beginning to catch and diagnose PANDAS sooner for families, there appears to be very little support in treating it, let alone support for the parents to endure, care for, and support the child(ren) during their outbursts/meltdowns. Parents can feel quite helpless and often hopeless when trying to defuse extreme, dangerous and threatening behaviors all day, every day. Aside from antibiotics to help fight the strep infection, these families often need respite from the traumatic effects the whole family may be enduring.
*If you're a parent living with PANDAS, please join our facebook parent support group for a community of supporters!
An antiobiotic approach seems to help some patients, and behaviors can normalize a bit, but sometimes this is only a temporary fix. Other common treatments include: cognitive behavioral therapy (CBT) and selective serotonin reupatake inhibitor (SSRI) medications. For more information about mental health medications, please visit the NIMH website at http://www.nimh.nih.gov/health. Recently, one parent introduced me to another treatment option called Low Dose Immunotherapy (LDI) that has been showing some positive results for her son so far. She highly recommends a podcast she found on betterhealthguy.com interviewing Dr. Ty. R. Vincent about LDI for Autism, Pediatric Lyme disease and PANDAS.
If your family has received the PANDAS diagnosis or your child is exhibiting some/most of these symptoms, you are not alone. Here are some helpful resources:
Other helpful resources: