Hope for Kids with PANDAS and PANS
Over the last few years parents and pediatricians have been noticing a strange phenomenon happening with certain kids. A child can be perfectly happy and normal, then out of the blue develop tics and spasms, extreme anxiety, obsessive compulsive behaviors, mood swings, anorexia, aggression, hyperactivity, cognitive changes, or any combination of the above.
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.
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 are PANDAS and PANS?
PANDAS and PANS are syndromes that bring on sudden, unexpected neurological and behavioral issues after an illness or infection.
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. PANS (Pediatric Acute Onset Neuropsychiatric Syndrome) is more general - instead of being caused by a reaction to strep, it can be caused by a reaction to several bacteria or viruses, including Epstein-Barr virus (EBV), influenza, coxsackie virus, various herpes viruses, mycoplasma, and the bacteria that causes Lyme disease.
In a PANS/PANDAS reaction, the child's 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 and PANS.
With 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.
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. PANS (Pediatric Acute Onset Neuropsychiatric Syndrome) is more general - instead of being caused by a reaction to strep, it can be caused by a reaction to several bacteria or viruses, including Epstein-Barr virus (EBV), influenza, coxsackie virus, various herpes viruses, mycoplasma, and the bacteria that causes Lyme disease.
In a PANS/PANDAS reaction, the child's 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 and PANS.
With 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 are PANDAS and PANS Treated?
This is a very serious condition and must be evaluated by a practitioner who has experience diagnosing and working with PANDAS.
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.
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.
Mainstream Treatment
The most common mainstream medical interventions are antibiotics and antivirals. For some kids, one course of antibiotics is all they really need to get better. Other kids might have a susceptibility to developing and PANDAS and PANS after an illness throughout their entire childhoods. Children in these circumstances are often given “antibiotic prophylaxis,” meaning they have to take antibiotics in some form for many years. If their trigger is identified as a specific virus, they may be put on long-term antiviral medication.
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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. All of these treatments have relatively good outcomes with kids, especially when paired with naturopathic treatments such as changes in diet, reduction in inflammation, and increasing gut health.
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Holistic Treatment
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On the naturopathic side, we offer a lot of help to go along with antibiotic treatment. Because PANDAS/PANS are inflammatory immune conditions, a lot of the focus in holistic treatment is on killing off whatever is triggering the reaction, reducing inflammation, and regulating the immune system - three things that naturopathic doctors tend to be pretty great at.
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ND's use anti-microbial herbs such as garlic, olive leaf extract, and lemon balm to directly reduce bacterial and viral load without stimulating the immune system. In the case of PANDAS and PANS, this is important because the child's immune system is already overreactive. Because most anti-microbial herbs do work by increasing the function of the immune system, it's very important that you seek guidance from a trained naturopathic doctor or other healthcare provider with a background in botanical pharmacokinetics before starting your child on an herbal regimen.
In addition, a naturopathic doctor can help the child rebuild a population of healthy gut bacteria after antibiotics, reduce the inflammation in the gut that can lead to increased autoimmune reactions, and treat any co-infections such as candida (yeast) or clostridium.
YES! There is Hope!
The good news is, many kids with PANDAS or PANS go into remission during treatment, and are able to stay symptom free for long periods - possibly even permanently, if exposures to strep or their trigger microbe are avoided. In addition, the vast majority of kids (current estimates are around 95%) grow out of PANDAS and PANS 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.”
Learn More...
The PANDAS Network has a lot of great information for parents and people who want to find out more about PANDAS, what causes it, and how it can be treated. Check out their website for further information or to find a list of providers in your area who are trained to recognize and treat PANDAS and PANS.
Books
Books
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