Sonny's Story

Sonny's symptoms started in April 2022 after getting a virus that seriously affected his immune system. His mum explained: “I noticed a rash at the time and believed it was a viral rash. From then onwards I noticed he was getting ill very easily, and the hives and rashes became very frequent until they occurred daily and sometimes repeatedly in one day. He looked anaemic and was getting poorly repeatedly. Within a few weeks of the initial virus, things became so bad we called an ambulance as he had such a severe reaction, which later led to the GP diagnosing Cold Urticaria, prescribing Epi-Pens and referring him to a local allergy clinic.” 

Sonny was diagnosed with Severe Cold Urticaria after some tests were performed. He tested positive for IgE allergies to dust mites, with a high total IgE allergy count of 786. His Eosinophil count was high (0.82). 

His tests for urine histamine and prostaglandin were not completed, but he tested negative for Urine Leucocytes and urine culture growth and blood. 

He was not able to complete a cold/heat test due to physical pain preventing him from being able to remain in contact with the machine long enough. He was not able to have a histamine release test, due to it not being available on the doctor’s blood test form.  

Treatments: At the age of 5, after experiencing symptoms including breathing difficulties leading to unconsciousness, anaphylaxis, raised BPM and a low oxygen count of 84, Sonny was admitted to resus and put on an asthma type inhaler and steroid inhaler (called burst therapy) repeatedly through the night, along with high doses of oral steroids (prednisolone). This treatment continued for a week or so during and after hospital admission to a children’s ward. 

Sonny has previously had 2 courses of Prednisone (high dose of 40mg per day, for 5 days). Both times they appeared to help, but a bounce back reaction appeared to occur afterwards, leaving him in no better health. He became hyperactive when taking steroids. 

Sonny has been hospitalised several times since, requiring oxygen again as part of his treatment. 

After initially being prescribed 10-20mg of Cetirizine twice daily after his first few hospitalisations, at a later hospital admission when he was 7, the Cetirizine was changed to Fexofenadine taken daily to help treat his hives and urticaria, and Montelukast also taken daily for the restriction of airways symptoms. He carries Epi-pens with him at all times. 

After taking peak flow tests daily for over 2 months, Sonny was diagnosed with asthma and was prescribed inhalers.  

His mum said, “I do not like giving this medication constantly as I think it is suppressing an underlying issue, as opposed to treating it.” 

Sonny's Symptoms: As with all MCAS characteristics, Sonny’s symptoms are multi-systemic and include fatigue, bloodshot eyes, night sweats, disrupted sleep, nausea, diarrhoea, abdominal pain, swelling (of hands, knees, feet and face including lips, nose and ears), skin rashes, itching skin hives, skin burning, skin flushing and redness, throat swelling, blocked nose, breathing difficulties, fatigue, leg pain, bed wetting, headaches and irritability. He has had 2 episodes which led to unconsciousness and anaphylaxis with low oxygen (84), very high heart rate and noisy fast breathing which required urgent hospital admissions. 

Sonny’s symptoms are persistent and have gradually become progressively worse. 

Sonny’s Triggers: Sonny reacts to stress, wind, exercise, water and cold temperatures including air conditioning.  

He reacts to body temperature changes, including getting hot when playing. He has symptoms when he sweats, especially when he is playing or wearing an airtight waterproof or his wellies. He has reactions to dust mites and possibly the sun/heat. 

Difficulties on our MCAS Journey: Following Sonny’s urgent admission to Resus A&E with anaphylaxis, low oxygen, unconsciousness and fast noisy breathing, medical staff could not find any secretions on the chest x-ray as they expected. His mum told us, “I did not find them willing to accept it was because Sonny has these reactions to temperature change and Cold Urticaria, even though I know this as a fact. This as a parent was so frustrating. He was admitted to hospital and treated with numerous medications.” 

Sonny’s mum talked about another incident. “One other GP was rude after Sonny fell unconscious on holiday and on the telephone my GP said, ‘He has EpiPens…what more can I do?’” 

MCAS limits the whole family's life in many circumstances such as: 

Medication and epi-pens need to be carried with Sonny at all times. 

Sonny’s school has been extremely supportive, but staff need to spend a lot of extra time taking care of Sonny e.g. with clothing and medication. Sonny’s mum was asked to have a DBS check so that she could join a team to go on any outings that Sonny attends with the school, as it is such a responsibility for them to manage his many daily triggers. Because Sonny always has a reaction during swimming, he has had to stop having swimming lessons. Headaches and nausea make him upset, and this makes it difficult to get to school. 

If Sonny has a bad reaction, he often experiences a tummy ache with diarrhoea the following day and has to stay at home during this time. Extra underwear is taken to school as he sometimes has accidents. His mum explained, “I believe Sonny gets embarrassed regarding the symptoms and wearing nappies at night as he gets older. I have noticed other parents feel scared to have him play unless I am present, but I feel this anxiety too.” Sonny is not invited to play at friend’s houses.  

Outings need to be carefully planned; they cannot enjoy family walks unless they are short in length and close to the car, in case Sonny suddenly becomes unwell, as he is becoming too heavy to carry for long distances. His family cannot grocery shop with him due to air conditioning and need to cover his skin, even in the summer in the wind. At the age of 7, Sonny still sometimes needs to use a buggy in cold weather as it triggers a reaction for him, including aching legs which make it uncomfortable for him to walk. 

We need to always take and carry medicine and are restricted in many ways. The discomfort, swelling, itching and flushing are distressing daily occurrences.

Sonny’s mum told us, “I have attended a couple of online events that also make me feel less alone. I have yet to connect with parents of children but feel this would really help as I am constantly looking for new strategies as I do not want Sonny excluded from family and social outings etc. I have learnt more about MCAS from Mast Cell Action.” 

Sonny’s mum added, “Our local paediatrician at Hastings has been very caring and understanding and has now made Sonny a referral to an MCAS clinic. The Allergy Paediatric Team at Evelina hospital (London) have been seeing Sonny for over a year, but they don’t have an MCAS specialist there. We are currently awaiting an appointment with a Mast Cell Clinic.” 

Both Great Ormand Street and Guy’s and St Thomas have told Sonny’s mum they don’t have mast cell specialists that can help Sonny.  

This condition can be serious and distressing. I feel shocked that this has occurred to my son who used to be healthy and symptom free, but I feel less scared now I have found the MCAS group here.