What is a flare?
PANS/PANDAS symptoms often follow a pattern of relapse and remission. Children with PANS/PANDAS may experience recurrent exacerbations of symptoms, known as "flares," during which new symptoms may also emerge. These flares can occur at any point in the course of the illness, despite ongoing treatment. While they can be challenging, it's important to recognize them as part of the nature of this condition.
Identifying triggers that contribute to these flares is crucial for symptom relief. In our practice, we frequently remind families that the healing process is akin to a marathon rather than a sprint. Even with the most effective treatment plans, full resolution of symptoms may not happen overnight or within a few weeks. Therefore, we focus on long-term goals and the gradual progress that occurs over time.
Families should anticipate flares, but being prepared for their potential impact on their child and having a range of strategies ready to use when a flare occurs can be immensely beneficial. With consistent and effective care, flares are likely to decrease in frequency, severity, and duration over time.
Why do flares happen?
The initial trigger for the onset of PANS/PANDAS may differ from the secondary triggers that lead to flares. For instance, while PANS/PANDAS could have been initially caused by a Streptococcal infection, subsequent flares are not necessarily triggered solely by further Streptococcal infections. They can be triggered by various factors such as different types of infections, high-stress situations, and numerous other triggers. This is because PANS/PANDAS is not solely a disease of infection, despite being initially caused by one.
Ultimately, PANS/PANDAS is a disorder characterized by immune system dysregulation. Children with immune dysregulation become more susceptible to various illnesses or exposures, resulting in increased inflammation. This unchecked inflammation in the body, particularly in the basal ganglia area of the brain, manifests as an exacerbation of symptoms such as anxiety, OCD, tics, and other hallmark signs of PANS/PANDAS.
Additional triggers for flares can include:
- Any acute illness, whether viral or bacterial.
- Presence of illness in the household, even if the child doesn't exhibit acute symptoms.
- Illnesses occurring in the classroom, regardless of the child's symptom presentation.
- Changes in the child's current medication or supplement regimen.
- Introduction of antimicrobial treatments, which may lead to die-off symptoms characterized by a temporary worsening of symptoms before improvement.
- Seasonal changes.
- Acute stressors or environmental changes, such as starting school or activities, moving, or experiencing loss.
- Environmental exposures, such as mold.
- Changes in diet.
- Immunizations.
- Anesthesia.
- Phases of the moon, including full and new moons.
How to manage a flare
It is crucial to reach out to your healthcare providers when a flare occurs, not only to seek assistance in managing the symptoms but also to enable them to monitor the progress and make necessary adjustments to the long-term treatment plan. During your discussion with them, make an effort to identify any potential triggers, even if they appear minor, so that your healthcare team can develop a personalized care plan tailored to your child's needs.
NSAIDS
Over-the-counter NSAIDs are the primary treatment used to manage flares, as they have the ability to reduce systemic inflammation by decreasing Th17 and TNF-alpha response, activating microglia to clear away cellular debris, and reducing blood-brain barrier permeability. Recent research has shown that NSAID use is associated with significantly shorter flare durations, with flares not treated with NSAIDs typically lasting up to 12 weeks. Flares managed with NSAIDs, particularly when started within 30 days of onset or as part of maintenance therapy, were, on average, four weeks shorter than those managed without NSAIDs.
The evidence from research aligns with our observations in clinical practice. NSAIDs can be administered either prophylactically or as needed within 30 days of flare onset, with our preferred NSAID being ibuprofen. The recommended dosage of ibuprofen for flare management is 10 mg/kg every 6-8 hours, with a maximum of 600 mg per dose.
As always, it's important not to administer ibuprofen on an empty stomach or just before your child lies down, as this can lead to stomach upset.
VIRUSES
Exposure to acute illnesses can trigger symptom flares in children with PANS/PANDAS, even if they don't exhibit classic symptoms like fever, lethargy, cough, or rash. Due to their dysregulated immune function, these children may experience neuropsychiatric symptoms instead. If your child is experiencing a flare while others in the household or classmates are ill, consider boosting their intake of antioxidants to support their immune system in effectively combating the illness.
Vitamin D is a go-to antioxidant for immune support. Research has long hinted at vitamin D deficiency in psychiatric patients, especially those with neuropsychiatric disorders like depression and schizophrenia. Vitamin D deficiency has also been associated with neurodevelopmental disorders including Autism. Vitamin D deficiency has been shown to be significantly more prevalent in the PANS/PANDAS patient group compared to controls. OCD patients with vitamin D deficiency showcased higher rates of comorbid ADHD than their counterparts without deficiency.
MOON CYCLE
It may sound unusual to think that the full moon could affect your child, but the lunar cycle does indeed impact many microorganisms and parasites. Research suggests that the full moon is correlated with increased parasite activity because our bodies respond to circadian rhythms influenced by the lunar cycle. During the full moon, parasites become more active and reproduce prolifically, likely due to fluctuations in our bodies' serotonin and melatonin levels. Specifically, during this time, we produce more serotonin and less melatonin, which seems to stimulate parasite activity.
You might be hesitant, thinking that your child doesn't have parasites, or feel uneasy about the idea of parasites in the body. However, it's important to note that all humans are constantly exposed to parasites, and many individuals may be asymptomatic carriers. In fact, the CDC estimates that millions of people harbor parasites without experiencing symptoms.
If you suspect that your child may be affected by lunar cycles, consider discussing with your healthcare provider the possibility of incorporating an anti-parasitic herbal supplement into their routine. Artemisia is a powerful anti-parasitic herbal. Artemisia’s main constituent artemisinin, is an anti-parasitic so effective in 2015 it received a Nobel Prize from its role in treating malaria! Its anti-parasitic effects make it a go-to for Babesia, a parasite. It also helps fight Lyme Disease and other parasitic infections. This could be taken two days before, the day of, and two days after a full moon or new moon, under the guidance of your healthcare provider.
DIE OFF
If you have recently initiated prescription or herbal antimicrobials, your child may be experiencing a die-off reaction, also known as a Herxheimer reaction or "herxing." When you introduce an antimicrobial, the microorganisms in your child's body may perceive a threat and respond by releasing biotoxins to alert their counterparts that something is wrong. In response to these biotoxins, the body increases the production of inflammatory cytokines such as IL-6, IL-8, and TNF-α. This heightened inflammation can then lead to flare-up symptoms.
Although this reaction indicates that the body is actively fighting infection, flares can be uncomfortable for your child. Using a binding agent to deactivate and excrete biotoxins can help alleviate symptoms. Binders aid in supporting the body's natural clearance of microbes, environmental toxins, biotoxins, and heavy metals. Additionally, they may assist in promoting elimination pathways and healthy detoxification in the gastrointestinal tract. Binders often contain ingredients such as activated charcoal, zeolite, and organic chlorella. These molecules possess adsorptive properties that help facilitate the elimination of certain toxins from the body.