This is a tragic change, and often parents and doctors are at a loss when trying to figure out what might be causing these symptoms and behaviors.
What is PANDAS / PANS?
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep, and it’s thought to be caused by an autoimmune reaction to cells in the brain that control dopamine production. In this type of reaction, the immune system essentially becomes confused and starts to mistake cells in a part of the brain for something dangerous, like bacteria or virally infected cells. Once this case of “mistaken identity” gets started, the immune system can begin to cause inflammation and irritation in the child’s brain, which is thought to be the cause of all the bizarre behavior we see in PANDAS.
This autoimmune reaction is most frequently triggered by a streptococcus infection, which is the bug that causes strep throat. A lot of kids who develop PANDAS have a bad cold, strep throat, or a sinus infection just before they develop their symptoms. However, because strep can also live deep in the tonsils, in the adenoids, or in the gut, sometimes kids with a strep infection will have a negative rapid strep test, but will still develop PANDAS after or during their infection.
To make it even more confusing, some kids develop a condition called PANS: Pediatric Acute Onset Neuropsychiatric Syndrome, which is not always associated with a strep infection - it may be triggered during a viral infection or infection with some other bug.
PANDAS is often a condition that has cycles - a kid may have a flare, then go into remission for a while with treatment, then have another exposure to strep (or whatever their trigger is) and then have another flare. Because of this your doctor may recommend that other people in the house are checked for strep infection, as they may act as a sort of “reservoir” for the bacteria.
How is PANDAS Treated?
Many practitioners confuse PANDAS / PANS for various other issues, such as Tourette’s syndrome, oppositional defiant disorder, or an autism spectrum disorder. This is in part because PANDAS is a relatively new phenomenon, and in part because there can be so many symptoms that PANDAS can look like a lot of other disorders. Misdiagnosis of PANDAS (even by the most well meaning doctor) can not only delay proper treatment, it may also result in a lot of unnecessary (and expensive) interventions like ineffective medications or procedures.
The most common mainstream medical intervention is antibiotics. For some kids, one course of antibiotics is all they really need to get better. Other kids might have a susceptibility to strep and PANDAS their whole life. Children in these circumstances are often given “antibiotic prophylaxis,” meaning they have to take antibiotics in some form for many years. If there is any chance the child is experiencing PANS from a viral infection, this may be treated with antiviral medication.
Other treatments include IVIG (intravenous immunoglobulin) and plasmapheresis, which are both treatments that involve putting concentrated antibodies from donor blood into the child’s system to help stop the autoimmune reaction.
On the naturopathic side, we offer a lot of help to go along with antibiotic treatment. Because PANDAS is an inflammatory immune condition, a lot of the focus in holistic treatment is on reducing inflammation and regulating the immune system - two things that naturopathic doctors tend to be pretty great at.
In addition, a naturopathic doctor should be able to help your child rebuild a population of healthy gut bacteria after antibiotics, and treat any co-infections such as candida (yeast), Lyme disease, or mycoplasma.
The good news is, many kids with PANDAS / PANS go into remission during treatment, and are able to stay symptom free for long periods - possibly even permanently, if exposure to strep is avoided. In addition, the vast majority of kids (current estimates are around 95%) grow out of PANDAS when they hit adolescence or young adulthood. This may be because the immune system becomes fully mature around that age, and it is better able to “self-correct.”