Navigating MCAS in Autism PANS and PANDAS
As parents, navigating the complex landscape of your child’s health can be challenging, especially when conditions like Autism, PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), and PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) are in the picture. One aspect that often intersects with these conditions is Mast Cell Activation Syndrome (MCAS). Understanding MCAS and its management is crucial for providing comprehensive care for your child. It’s important to recognise that MCAS is not a mysterious or predetermined fate for your child. There is hope for a positive outcome, and this journey can be simplified into three vital components: supporting the adrenal system, reducing inflammation, and addressing the root cause. By focusing on these key elements, you can guide your child towards a path of healing, demonstrating that they can come out on the other end of this challenging journey. Let’s delve into the world of MCAS and explore both medical and natural solutions that can make a difference.
Unravelling the Mechanism of MCAS
MCAS is like a security system in your body where mast cells act as guards. Normally, they respond to genuine threats (like allergies) appropriately. However, these guards can be overly sensitive in MCAS, responding even when there’s no real danger. In MCAS, disruption is like guards causing chaos in a building due to alarms being set off due to faulty wiring in multiple locations in the building – think of upset stomachs and vomiting as the mess they create. It’s similar to how MCAS may bring about complex neuropsychiatric symptoms, impacting well-being.
The Mechanism in a Nutshell:
1. Mast Cell Activation:
Triggers for mast cell activation vary, including allergens, stress, infections, or certain medications.
2. Histamine Release:
Histamine, a key player in the immune response, is a primary substance released by activated mast cells.
3. Effect on Gastrointestinal Tract:
Histamine directly influences the smooth muscle of the gastrointestinal tract, contributing to symptoms such as increased permeability of blood vessels and stimulation of stomach acid secretion.
4. Stimulation of Vomiting Reflex:
Histamine can stimulate the vomiting centre in the brain, leading to symptoms like nausea and vomiting.
5. Other Mediators:
Mast cells release additional mediators, such as prostaglandins and leukotrienes, contributing to inflammation and exacerbating symptoms.
Key Symptoms of MCAS in Children
MCAS emerges as a consequence of our modern lifestyles bombarding mast cells, the defenders of our immune system. These cells, equipped with over 200 receptors, constantly respond to environmental and internal stimuli. Dysregulated mast cells, a result of constant triggers, become hypersensitive and erratic, releasing mediators like histamine inappropriately. This cascade leads to a spectrum of symptoms. The key ones we see in our clinic include the following:
- Skin conditions (rashes, hives, itching)
- Gastrointestinal problems (nausea, abdominal pain, diarrhoea, vomiting)
- Brain fog (cognitive dysfunction, difficulty concentrating)
- Sleep disturbances (insomnia, disrupted sleep patterns)
- Joint and muscle pain
- Respiratory issues (asthma, shortness of breath)
- Urinary frequency, persistent UTIs and Endometriosis (inflammation of the uterine lining)
- Headaches and migraines
- Cardiovascular symptoms (rapid heart rate, low blood pressure, POTS)
- Allergic reactions (to various triggers)
- Fatigue and malaise
A Holistic Approach to Managing MCAS
Managing MCAS is like planning a road trip. Your child’s health is the journey, medical and biomedical interventions are the roads, and lifestyle changes are the guideposts. Just as a skilled driver adjusts the route, collaborating with healthcare professionals, a tailored plan can be crafted to suit your child’s specific needs.
Natural Solutions:
Supporting the adrenal system:
Consider the adrenal system as the structural foundation of a building, vital for maintaining stability and resilience. In the context of MCAS, supporting the adrenals is akin to reinforcing this foundation. Much like a robust foundation supports the entire structure, a well-supported adrenal system can help regulate immune responses, manage stress, and fortify the body against the challenges posed by MCAS, contributing to a more resilient overall health. Here are some of most powerful tools we use in our clinic.
Adrenal Cortex:
Supports adrenal function by providing essential nutrients.
Magnesium (Glycinate or Threonate):
Glycinate: Easily absorbed form of magnesium.
Threonate: Has the ability to cross the blood-brain barrier (BBB), potentially supporting cognitive function.
Phosphorylated Serine:
Supports cognitive function and may help regulate the stress response. Greta for reducing cortisol.
Ashwagandha:
An adaptogenic herb that may help the body adapt to stress and support overall well-being. Great for kids with double COMT.
Lemon Balm:
Has calming properties and may support relaxation.
Rhodiola:
An adaptogenic herb that may help the body adapt to stress and improve energy levels.
L-Theanine:
Found in tea leaves and may have calming effects and support cognitive function.
The three top adrenal support supplements we use in our practice are Adrenal Cortex by Thorne, Seriphos by InterPlexus, and MegaMag Calmeze by Nutri Advanced. Use Brainstorm10 to get 10% off all these products.
Controlling inflammation and Stablise Mast Cells:
Reducing inflammation is vital in managing Mast Cell Activation Syndrome (MCAS). Imagine inflammation as a fire and MCAS as the accelerant intensifying it. In this scenario, mast cells are like firefighters with faulty hoses, spraying inflammatory signals uncontrollably. Reducing inflammation is akin to fixing these hoses to address MCAS, stopping the inflammatory flames from spreading.
Curcumin:
Known for its anti-inflammatory properties and mast cell stabilisation.
Quercetin:
Demonstrates mast cell-stabilising effects and anti-inflammatory properties.
DAO (Diamine Oxidase):
Enzymes are involved in breaking down histamine in the gut.
Boswellia Serrata:
Contains anti-inflammatory compounds inhibiting pro-inflammatory enzymes.
Ginger:
Exhibits anti-inflammatory and antioxidant effects.
PEA (Palmitoylethanolamide):
Fatty acid amide with anti-inflammatory properties.
Probiotics for Gut Health:
Contribute to a balanced gut microbiome and potential histamine-lowering effects.
Microimmunotherapy Formulations:
Designed for immune modulation, with potential applications for immune-related conditions.
Two of my favourite combination products for controlling inflammation are Neuroflam (K46) by Apex Energetics and Cyflacalm by Beyond Balance (you need to be linked to our account by using code IA12LW to access to these products and get 10% off your order. I also love Microimmunotherapy for this condition, which requires a bespoke and targeted approach. Please book a free Discovery call using the link here to discuss your child’s needs.
Stabilising Mast cells and processing histamine:
Stabilising mast cells is crucial in Mast Cell Activation Syndrome (MCAS). In MCAS, hyperactive mast cells release excessive signals, disrupting communication. Stabilising mast cells is like introducing an expert to refine this network, ensuring a more measured response and restoring balance to the immune system.
1. Quercetin: Found in foods like apples, onions, and berries, quercetin is a flavonoid with anti-inflammatory and antiallergic properties.
2. Vitamin C: Known for its antioxidant properties, vitamin C may help stabilise mast cells. Citrus fruits, strawberries, and bell peppers are good sources.
3. Bromelain: An enzyme found in pineapple, bromelain has been suggested to have anti-inflammatory effects and may contribute to mast cell stabilisation.
4. Butterbur (Petasites hybridus): Extracts from the butterbur plant have been investigated for potential antiallergic effects and may help stabilise mast cells.
5. Stinging Nettle (Urtica dioica): Some studies suggest that stinging nettle may have anti-inflammatory properties, making it a potential candidate for mast cell stabilisation.
6. Quassia Bark: Quassia is a plant that has been traditionally used and is being studied for its potential anti-inflammatory and antiallergic effects.
7. Perilla Extract: Derived from the perilla plant, perilla extract has been studied for its anti-inflammatory properties and may have potential as a mast cell stabiliser.
8. Rutin: Found in certain fruits and vegetables, rutin is a flavonoid with antioxidant properties that has been studied for its potential anti-inflammatory effects.
One of my favourite combination products is Histo-X by Apex Energetics, which is a potent mast cell stabiliser and a great supportive supplement to Neuroflam (K46) by Apex Energetics, to help manage inflammation. Use code IA12LW to access to these products and get 10% off your order. I also love Microimmunotherapy for this condition, which requires a bespoke and targeted approach. To discuss your child’s needs, please book a free Discovery call using the link here.
lifestyle strategies
One of the very first things to get under control is the stress response, and a combination of the techniques below and adrenal support is vital. Many autistic kids and those with PANDAS and PANS have been in ‘fight or flight’ for months and sometimes years. Imagine your body as a team of firefighters responding to an emergency. When a fire breaks out (representing stress), the firefighters (your body’s stress response) rush to the scene to contain and control the situation. Now, if this initial fire isn’t dealt with and continues to rage on, asking the same firefighters to simultaneously handle other complex tasks, like repairing a broken water main or rescuing a cat from a tree (representing medical and biomedical interventions), becomes increasingly challenging.
1. Stress Management:
Mindfulness and Relaxation Techniques: Practices such as mindfulness meditation, deep breathing exercises, the Emotional Freedom Technique, and progressive muscle relaxation can help manage stress, a common trigger for mast cell activation.
2. Regular Exercise:
Low-Impact Activities: Engaging in activities such as walking, swimming, or yoga can promote physical well-being without overstimulating the immune system.
3. Balanced Sleep Hygiene:
Consistent Sleep Schedule: Establishing a regular sleep routine and ensuring adequate sleep duration is essential for overall health and may help reduce the likelihood of symptom flare-ups.
4. Hydration:
Adequate Fluid Intake: Staying well-hydrated is essential for maintaining overall health and supporting the body’s natural detoxification processes.
5. Healthy Diet:
Low-Histamine Diet: Some individuals with MCAS benefit from reducing their intake of high-histamine foods, such as aged cheeses, fermented foods, and certain fruits. I wrote an article for the Autism Eye magazine about histamine a while ago, our number one-read article on our site. You can read it here.
Anti-Inflammatory Diet: Emphasising whole, unprocessed foods rich in fruits, vegetables, and omega-3 fatty acids can help reduce inflammation.
6. Environmental Modifications:
Allergen Control: Minimising exposure to known allergens, pollutants, and environmental triggers can help prevent mast cell activation.
Temperature Control: Extreme temperatures, whether hot or cold, may trigger symptoms, so maintaining a comfortable environment is important.
7. Chemical Avoidance:
Reducing Exposure to Chemicals: Minimising exposure to strong perfumes, cleaning products, and other chemical irritants can be helpful.
8. Regular Monitoring:
Symptom Tracking: Keeping a detailed record of symptoms, triggers, and responses to interventions helps identify patterns and assists healthcare professionals in refining the management plan.
9. Mind-Body Practices:
Yoga and Tai Chi: These gentle, mindful exercises can reduce stress and promote overall well-being.
Biofeedback: Some individuals find biofeedback helpful in learning to control physiological responses to stress.
10. Social Support:
Connecting with Others: Building a support network with family, friends, and support groups can be beneficial for emotional well-being and coping with the challenges of living with MCAS.
Medical Solutions:
Discussing these with your medical doctor, who will know which markers are appropriate for your specific needs, is important. I will also say there is a good chance that these lab tests will come back as normal in an MCAS patient. Use the lab work as a guide or as a way to get treatment, but don’t assume that if the lab work is normal, MCAS has been ruled out. Picture your body as a lively orchestra. Lab tests are like checking each musician’s instrument – they may sound okay on their own. But, just as a perfect instrument doesn’t ensure a beautiful symphony, normal lab results don’t always mean everything is well. Health issues can be subtle, like the nuances in a musical piece. So, even if the instruments (lab results) seem fine, it’s crucial to listen to the whole orchestra (your overall health) for a complete picture.
1. Antihistamines:
H1 Antihistamines (e.g., cetirizine, loratadine) to block histamine effects.
H2 Antihistamines (e.g., famotidine, ranitidine) to reduce stomach acid production.
2. Mast Cell Stabilisers:
Cromolyn Sodium to prevent the release of mast cell mediators.
3. Leukotriene Inhibitors:
Montelukast blocks the action of inflammatory leukotrienes.
4. Corticosteroids:
Short-term use in severe cases to suppress inflammation.
5. Immunomodulators:
Considered in specific cases, including cyclosporine and interferons.
Tests to Assess MCAS:
1. Serum Tryptase Levels:
Elevated levels may indicate mast cell activation, though not specific to MCAS.
2. Urinary N-Methylhistamine:
Indicates increased histamine release.
3. Prostaglandin D2 (PGD2) Levels:
Elevated levels may suggest mast cell activation.
4. C-Reactive Protein (CRP) and Erythrocyte Sedimentation Rate (ESR):
Markers indicating inflammation.
5. Comprehensive Allergy Testing:
Identifies specific triggers that activate mast cells.
Final words
Navigating Mast Cell Activation Syndrome (MCAS) in our precious autistic children and those grappling with PANDAS and PANS demands a deeply personal touch. As parents, the journey may feel overwhelming, but rest assured, a thoughtful and customised approach is key. Collaborate closely with healthcare professionals, weaving together a tapestry of both medical and natural interventions to craft a holistic care plan. This fusion allows you to address the intricacies of your child’s health, fostering improvements in their overall well-being. Remember, each child is wonderfully unique, and by staying connected with your healthcare team, you can forge a plan that truly transforms your child’s life, making it richer and more fulfilling.
Important
The information provided in this article is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult with medical doctors or qualified functional medicine practitioners to address specific health concerns and obtain personalised guidance tailored to individual needs.
