Has your child developed new allergies or hypersensitivities?
A number of children with Long Covid are being diagnosed with MCAS - otherwise known as Mast Cell Activation Syndrome.
Read on to find out more about the symptoms, causes, diagnosis and treatments.
With thanks to the team at Mast Cell Action for their support with this content. You can find many more resources on MCAS over on their website. This blog is a living resource and will be updated and added to as needed.
Overview
Mast Cell Activation Syndrome (MCAS) is a collection of symptoms linked to a hyperactive allergy response from the body. These symptoms of inflammation happen frequently and often in response to triggers not usually considered harmful. For some people their body’s response to these triggers can lead to anaphylaxis.
What we know
Mast cells are a type of blood cell found in all body tissues. They help protect the body by detecting threats like bacteria, viruses and toxins by releasing chemical “mediators” (e.g. histamine, prostaglandins, etc) that help to organise an immune response. Unfortunately, in MCAS, the mast cells are easily activated, releasing their chemical mediator to often unharmful triggers. This leads to many unwanted symptoms in various body systems.
People with MCAS often have comorbid conditions such as Ehlers Danlos Syndrome (EDS), type two diabetes or Dysautonomias, such as PoTS.
Symptoms
Multiple symptoms can be experienced, across body symptoms. They range in severity from unpleasant to debilitating and can include the medical emergency anaphylaxis. They may come and go, and change in severity, moving from mild to an increased severity or frequency if the immune system is triggered.
Neurological
Headache, brain fog (memory and concentration difficulties); numbness, pain or tingling skin; anxiety, behavioural issues, rages.
Cardiovascular
Chest pain, low blood pressure, fast heart rate, fainting or lightheadedness.
Gastrointestinal
Bloating, stomach cramps or pain, reflux, feeling or being sick, diarrhoea, constipation, dumping syndrome, food allergies or intolerance.
Nasal-Ocular
Nose congestion, eye watering and itching.
Respiratory
Sore throat, hoarseness, wheezing, shortness of breath, throat swelling.
Musculoskeletal
Joint and muscle pain, osteoporosis (brittle bones), loss of bone mass.
Genital/Urinary
Genital pain or swelling, pain when urinating, vaginal pain, discharge or itching, bladder urgency or loss of control.
Dermatological
Flushing, redness, hives or wheels, itching with or without a rash, swelling.
General
Extreme tiredness; anaphylaxis, which can be life threatening.
Recognising Anaphylaxis
This is a serious allergic/hypersensitive reaction to a trigger (common ones are food, stinging insect venoms, drugs)
Rapid onset (minutes to hours) of symptoms involving the skin or inside the mouth or nose (e.g. hives, swollen lips or tongue)
Breathing difficulties
Reduced blood pressure, collapsing, incontinence
Persistent gastrointestinal symptoms (e.g cramps or vomiting)
Diagnosis
MCAS is another condition that is not routinely recognised. It is not uncommon for people with MCAS to spend several years being referred from specialist to specialist, yet stay undiagnosed.
First symptoms need to be recognised (which can be difficult as they overlap with other syndromes).
The next step is often to test treatments, such as anti-histamines, anti-prostaglandins or mast cell stabilisers.
Mediator-tests (*via blood or urinary tests) should be completed by an experienced provider, however timing these tests to occur during a symptomatic flare up of MCAS can be difficult. There is no single test that can definitively diagnose MCAS - this information is used in conjunction with the other steps.
The final step is to rule out other diagnoses.
Treatment
Trigger Avoidance
Self-management through avoidance of triggers - where they are easily identified and avoided. This is not always feasible.
Special diets such as low-histamine or FODMAPS may help - it is best to speak to a dietician or nutritionist who is aware of MCAS for advice.
Medications
Medications are available but they should be trialled under medical guidance, so even for over the counter medications it is best to check with your healthcare provider on appropriateness and dosage. For some people certain medications or excipients (colouring agents, preservatives and fillers) can trigger a flare-up of their MCAS.
It is best to keep a symptom diary and medications may be added in one by one to ensure any beneficial effect is attributed to the correct medication.
Where can I learn more:
LCK Senior Occupational Therapist
Date 22/3/22
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In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
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