It's estimated that 1 in 200 children will develop PANS or PANDAS in the United States. This autoimmune and inflammatory condition can create a neurocognitive storm that impacts many areas of a child's well-being. With the sudden onset and extreme change in the child's behavior and abilities that are characteristic of PANS and PANDAS, it is essential to seek care as soon as symptoms begin. Clinical expertise states that the prognosis is very good if the child is diagnosed early and treated accordingly. These conditions become much harder to resolve when identification and treatment are prolonged. With that being said, research and integrative therapies for treating PANS/PANDAS are greatly needed and would provide broader support for care in this area.
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What is PANS/PANDAS?
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, while PANDAS is an acronym that stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection. It is considered a subset of PANS. Both conditions involve an acute onset of neuropsychiatric symptoms which includes obsessive-compulsive behaviors that resemble OCD. Red flags often include sudden mood and behavior changes and eating restrictions that the child didn't previously express. Many parents express that their child "changed overnight" due to the extreme differences.
What's the Difference Between PANDAS and PANS?
While these two conditions are very similar, there are slight differences based on causation. PANDAS is said to be caused by Group A Streptococcus infection, while PANS is typically caused by other infectious agents such as the flu, chickenpox, Lyme disease, or mold toxicity.
What Causes PANS/PANDAS?
Scientific research has stated that an abnormal immune system response potentially causes these two conditions. It has been theorized that when an infection such as strep or influenza invades the body, instead of the immune system attacking the invader, it begins attacking self-cells in the brain and nervous system. In PANDAS, the process by which this occurs is through molecular mimicry. The process entails the formation of Group A Streptococcal antibodies, which then cross-react with antibodies in the brain, leading to psychiatric and neurological disarray. When this cross-reaction happens, it impacts and causes inflammation in the brain's basal ganglia. The basal ganglia control emotions, behavior, cognitive and sensory processing, parts of learning, and motor function. This theory makes sense, as you will see a sudden onset of changes in these areas in kids that develop PANS/PANDAS.
What Age Does PANS/PANDAS Affect?
These conditions most frequently impact children ages 3 to 12 years old. Clinical feedback is that it affects males more than females. There is also no set cut-off age for developing PANS/PANDAS, but the evidence suggests that older adolescents do not have this sensitive immune response to invading pathogens.
Symptoms of PANS/PANDAS
The sudden onset of symptoms is a distinguishing feature of PANS/PANDAS. While a child's clinical picture can vary from one to another, they all typically display both neurological and psychological symptoms:
- Mood or personality changes, especially if irritable or suddenly enraged.
- Bedwetting
- Depression or anxiety
- Issues sleeping
- Disinterested in foods
- ADHD symptoms, including fidgeting
- Obsessive-compulsive like behavior
- Tics and/or jerky movements
- Aggressiveness
- Baby talk or acting clingy
- Bedtime fears that are new onset
- Memory issues that can impact reading and math skills
- Sensitivity to noise, touch, clothing, or light
How is PANS/PANDAS Diagnosed?
Criteria for diagnosis of both conditions are based on three parameters that are assessed clinically. This includes observation of abrupt onset or recurrence of restrictive eating or OCD. The second criterion is the sudden onset of at least two neuropsychiatric symptoms: anxiety, behavioral regression, mood disorder, regression in school performance, dramatic response to sensory input, abnormal motor movement, and sleep or urinary disturbances. In conjunction with those two parameters, the child's symptoms can not be explained by any other known or investigated medical or neurological disorder. A PANDAS diagnosis must also meet the criteria of having a previous group A Beta-hemolytic strep infection, confirmed through either a positive swab strep test or a history of scarlet fever. A current or recent streptococcal infection can also be confirmed by titer tests for antistreptolysin-O (ASO) or anti-DNase B antibodies against strep.
Functional Medicine Labs That Can Help Individualize Treatment of PANS/PANDAS
These conditions are made by clinical assessment, as there are no specific labs to diagnose. Your basic lab work, microbe-specific panels, and antibody markers are helpful labs to see if any infection is occurring or organ systems are in dysfunction. All of these labs, unfortunately, entail a blood draw. But if done together, that is only one poke and hopefully well managed by the child.
Basic Labs
Obtaining a Complete Blood Count (CBC) with Differentials and Comprehensive Metabolic Panel (CMP) will provide insight into the status of the liver, kidney, blood sugar, and any indication for progressive conditions like anemia or an infection.
Inflammatory Markers
C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) are two inflammatory biomarkers that will tell us if inflammatory processes are happening in the body. Testing these will provide a good benchmark when implementing anti-inflammatory protocols.
Streptococcal Antibodies
Two antibodies can indicate if a recent or current strep infection occurred. Mosaic Diagnostics offers a combo Streptococcus Antibodies Profile that tests for Anti-DNase and Antistreptolysin O (ASO) Antibodies. This test can confirm PANDAS if all diagnostic criteria are also met.
Comprehensive Stool Analysis
Getting a microbial stool analysis test will provide insight into gut health. The GI-MAP by Diagnostic Solutions offers a comprehensive option for assessing dozens of microbial invaders. It includes testing for Streptococcal species, the main concern with PANDAS. The results can assist with microbial imbalances, some of which can correlate to illness, inflammation, and immune function.
Additional Labs to Check
A rapid strep test is typically performed and sent out for further culturing. This can confirm an active group A Streptococcus, the commonly linked form of PANDAS. Making sure the swap sample is cultured will give time for the bacteria to grow, which is a more thorough way of evaluation.
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Conventional Treatment for PANS/PANDAS
Treatment for PANS and PANDAS can vary depending on the severity of symptoms. For present infections and situations that are mild to moderate, the child would potentially receive a combination of antibiotics, corticosteroids, behavioral therapy, anti-inflammatories, and low-dose SSRIs. For moderate to severe PANS/PANDAS, the child would receive all the previously mentioned interventions with the addition of Intravenous Immunoglobulins (IVIG) and Plasmapheresis. IVIG can significantly improve symptoms brought on by PANS and is a highly sought treatment when children are diagnosed with this condition. Plasmapheresis is a blood cleansing process used successfully in treating these conditions. The treatment plan is much more aggressive for adolescents dealing with severe and extreme versions of PANS/PANDAS. This includes multiple rounds of steroids, antibiotics, IVIG, Plasmapheresis, Rituximab (a monoclonal antibody), and DMARDS (Diseae-Modifying Antirheumatic Drugs).
Complementary and Integrative Medicine Treatment for PANS/PANDAS
Complementary and integrative medicine treatments can be excellent additions to a holistic plan for children with PANS/PANDAS. Below are recommended treatments:
Cognitive Behavioral Therapy (CBT) for PANS/PANDAS
CBT, especially with exposure and response prevention (ERP), has been widely used to address the OCD features of PANS/PANDAS. CBT aims to help kids develop coping skills and change intrusive thought patterns, behaviors (such as OCD), and any correlated emotions. Exposure and response prevention incorporates confronting the thoughts, actions, or situations your child would obsess about and then reframing how to respond to those urges. This therapeutic approach essentially retrains the brain to process this obsession in a different light and choice.
Nutrition for PANS/PANDAS
Often in these conditions, a child's eating pattern becomes very restrictive. In these situations, it's best to emphasize healthy food choices that the child will eat. Due to the inflammatory nature of PANS/PANDAS, an anti-inflammatory diet would benefit a child suffering from one of these conditions. Another avenue to consider is the gut-brain connection. If their gut microbiome is imbalanced, supporting the child's gastrointestinal tract through eating habits would be the right direction. An example of a microbiome diet includes the 4 Rs, which are Removing the interfering foods that are impacting the gut, Repairing the gut wall, Replacing the gut with necessary nutrients, and Reinoculating the gut with beneficial probiotics.
Supplements and Herbs That Help PANS/PANDAS
Complementary treatments for PANS/PANDAS have not yet been investigated much. But natural therapies for symptoms of these conditions have undergone evidence-based studies.
Probiotics
Gut dysbiosis has been shown to have a role in neurocognitive and mental health disorders. One of the causes of gut dysbiosis can be antibiotic-induced, as it disrupts the bad and good gut flora. The use of probiotics, especially strains of Streptococcus spp, Bacillus, Lactococcus, Lactobacillus, Saccharomyces, Bifidobacterium, and Leuconostoc cremoris have also been shown to be protective against antibiotic-associated diarrhea. While probiotic use for PANS/PANDAS has not been directly studied, the use of antibiotics as a first-line therapy to treat the condition may indicate that probiotics are necessary to support gut health.
Omega-3 Fatty Acids
The use of Omega-3 Fatty Acids for decreasing inflammation in the body has been scientifically recognized. Providing your cells with these omegas is necessary as the body doesn't inherently produce them. If the child is expressing ADHD behaviors, using Omega-3 could also assist in their neurocognitive function. The recommended dose for kids is 500-2400mg per day, depending on the case.
Curcumin
The active ingredient in the Turmeric plant has been studied for its role in depression and anxiety. If your child is experiencing various symptoms of depression or anxiety due to their sudden onset of PANS/PANDAS, curcumin may be beneficial. The use of this anti-inflammatory compounding can help reduce symptoms of depression and anxiety. This plant extract has been studied and used at doses between 45mg-4000mg daily to treat immune and inflammatory conditions. It's best to consult with your integrative healthcare provider for specific dosing for your child.
Mind-Body Therapies for PANS/PANDA
There is no evidence-based data on the effectiveness of mind-body or relaxation therapies specific to PANS/PANDAS. But there are options to treat anxiety, depression, and ADHD. Equine Therapy (horse therapy) has been a proven intervention for relaxing the mind and body of children experiencing ADHD symptoms. Mindfulness meditation has also proven to be a great intervention in supporting children with anxiety and depression.
Acupuncture with Moxibustion for PANS/PANDA
Regarding Tic symptoms in these conditions, acupuncture has proven to be an effective integrative treatment modality. A meta-analysis assessed 39 studies that used acupuncture and Traditional Chinese Medicine to treat TICS. The results have indicated that acupuncture can effectively inhibit muscle twitching episodes. Chinese Medicine can assist in the healing of dysfunction occurring in the body. Acupuncture and TCM can be good therapy independently or in conjunction with Western Medicine interventions.
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Summary
Promptly assessing a child that presents with acute onset of OCD, restrictive eating, and other neuropsychiatric symptoms is essential in restoring health. Looking at areas of susceptibility of pathogenic microbes in children would be a great way to screen who is more at risk of developing these conditions. While research and science still have a long way to go in treating PANS/PANDAS, taking the necessary steps with conventional medicine interventions, functional medicine testing, and complementary and integrative treatments can provide the best outcomes for a child.