Jensen's Story

Although he was happy, I just knew he was different.

How It Began

Jensen's mum tells his story...

Jensen was diagnosed with iron deficiency anaemia in June 2015 and began iron supplements, he also had suspected fructose malabsorption but he was too young for the diagnosis to be confirmed. We saw some improvements after eliminating fructose from his diet, but diarrhoea, flushing and hives persisted; his stools caused open sores and bleeding when they were in contact with the skin. Jensen was referred to the complex allergy clinic in September 2015, and blood tests showed a low-level cow’s milk protein allergy. He was diagnosed with chronic idiopathic urticaria and prescribed cetirizine, hydroxyzine and montelukast, with continued iron supplements. Without support from a dietitian, a very restrictive low histamine, low fructose and dairy-free diet was difficult to maintain, so dairy and most vegetables were reintroduced. Although some symptoms returned, he seemed a lot better. By Easter 2016, all medication was removed due to Jensen having very few ‘reactions’. 

Towards A Diagnosis

In May 2016, an allergist gave the diagnosis of chronic idiopathic urticaria and angioedema and stated the symptoms would wax and wane over the years. Jensen was discharged, with plans to review in 5 years. Due to low IgE and IgA in Jensen’s blood, the allergist said he had no allergies and we should continue to introduce new foods over time.  Two days after being discharged, on a record hot day, Jensen woke with full facial swelling (including lips and eyes). He was dozy and not stable on his feet, even with medication. A visit to A&E put this down to angioedema, which took 7 days to return to normal.

In November 2016, we received a very dismissive letter from the allergist telling us to withdraw all medication to see if he has any reactions. Soon after this, we were contacted to make an urgent appointment as Jensen had a blood result (tryptase) out of range. The allergist re-ran a few tests and acknowledged that, without antihistamines, Jensen was showing signs of dermographism. He also acknowledged that Jensen reacted to his own emotions with flushing red face, and lip and tongue swelling.  

This allergist agreed to a formal referral to one of the few NHS doctors dealing with MCAS. Based on his history and elevated tryptase, MCAS was suspected and we agreed to start him on sodium cromoglicate in January 2017.  In March 2017, Jensen had a review with an allergist who amended his medication owing to increased use of rescue medication. He was now taking: sodium cromoglicate 100mg 4x daily; ketotifen 1mg twice daily; cetirizine 10ml once in morning (10ml as rescue med); fexofenadine 60mg once at night.  In May 2017, Jensen was seen by a urologist owing to a history of urinary incontinence and trace blood in urine samples. Cystitis or nephritis were suspected. We tried to find a urologist with some experience of MCAS, but without luck so far. 

Despite all that Jensen has been through, he is the most courageous, loveliest little guy with the most infectious smile and laugh.

Getting Support

Every aspect of Jensen’s day has to be planned out using information from online resources he is currently on a low histamine, low fructose and no fresh dairy diet. His medication is keeping the majority of his symptoms in check, although he continues to have suspected UTI and suffers from pain and urinary incontinence.  Jensen’s triggers are environmental as well as dietary; sometimes his triggers are unknown and sometimes they are obvious, one day he could react to something, another day he won’t. With careful management of his dietary and external triggers, and medication, Jensen has a reasonably tolerable quality of life though sometimes he cannot walk due to the pain from his urology symptoms.

Sometimes his triggers are unknown and sometimes they are obvious.