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Anaphylaxis Campaign
Health Professional Conference:
20 years supporting people with severe allergies.

November 2014

Notes on the presentations by Michelle Berriedale-Johnson


Consumer attitudes to precautionary labelling – Lynne Regent

Cow's milk allergy. Are we any nearer a practical way of initially recognising it, confirming it and them optimally managing it? – Dr Trevor Brown

How to support the psychological needs of patients with food allergy and their families – Dr Rebecca Knibb

Warning, this may contain TRACES of common sense. Managing food allergen thresholds for public, regulators and the food industry – Dr Andrew Clark

Twenty years of allergy research – a paradigm shift in philosophy taking place? – Dr Michael Perkin

Managing anaphylaxis on a day to day basis – Sue Clarke


Consumer attitudes to precautionary labelling – Lynne Regent, CEO the Anaphylaxis Campaign

The Anaphylaxis Campaign's recent survey of consumer attitudes included just under 1,000 adults (aged over 16) buying either for themselves or their families, most of whom were female, fairly well informed and diagnosed in a clinic over 3 years ago.

Precautionary, or 'may contain' labeling is not a legal requirement on any food product, nor is it covered in the new allergen labelling regulations. The campaign's own advice is that the warnings should always be heeded, even if the consumer does not believe the risk to be that great. And, if the warning seems totally stupid (a peanut warning on an apple) then they should check with the manufacturer.

Interesting finding from the survey included that:

• 95% respondents would read the labels on a packaged food they had not bought before.
• 75% would read the labels on a packaged food that they had bought before
• 73% bought packaged foods at least once a week
• 1/3 had bought packaged foods with 'may contain' warnings
• Those who bought packaged foods regularly were the least likely to head 'may contain' warnings
• Also unlikely to heed 'may contain ' warnings:
   – Those who who were self diagnosed
   – Those who where intolerant rather than allergic
   – Men and students
• Those who rarely buy pre-packs or who are buying for someone else are most likely to read the labels and heed the warnings.

The wording of the warning does make difference so that while 77% will buy a products which says that it is 'suitable' for them, only 50% will buy one which says that it is 'manufactured in a factory which also handles' their allergen.

Do manufacturers overuse the warnings and do they meet the allergic consumer's needs? The majority verdict was yes, they do overuse the warnings and no, the warnings do not meet consumers' needs. Because the majority of those surveyed did not trust manufacturers' labels, they wanted to know why the 'may contain' warning was being used.

The issue is that levels of contamination risk vary enormously but the current wording does not reflect real risk levels. As a result the warnings are all too often ignored even when there is a genuine risk. More and clearer information is needed if the allergic consumer to be able to make an informed choice.

Cow's milk allergy. Are we any nearer a practical way of initially recognising it, confirming it and them optimally managing it?

Dr Trevor Brown, Consultant Paediatric Allergist, Ulster Hospital, Belfast.

The new BSACI and MAP guidelines for clinicians treating CMA (Cow's Milk Allergy) are particularly welcome because CMA is such a difficult condition to diagnose. There are many different ways in which a child can be sensitive to cow's milk, sensitivity can result in a multiplicity of symptoms and those symptoms often mimic other conditions.

CMA is thought to affect 2.3% of children in the UK, 2.5% in the US – so is slightly more common in infants than egg allergy. Although the condition is becoming more common worldwide, it is plateauing in the US and in Europe.

Symptoms usually appear within the first year of life, most commonly within the first few months. At 2 years 81% of children are still sensitive but this has dropped to 21% by age 16. However, if the condition is untreated in infancy it will predispose the child for the allergic march on to other food allergies. This is particularly concerning as currently 1 in 3 cases go undiagnosed. Even when diagnosed it may take four visits to the doctor before the child is prescribed a hypo allergenic formula – and then, all to often, it is the wrong one.

Food challenge is essential for accurate diagnosis of CMA and this can be performed at home although it is often hard to persuade parents who believe their child is allergic to cow's milk to perform challenges at home. The response time, once cow's milk is removed from the diet, is 1–2 weeks, but when challenged the child will regress within 1–2 days.

CMA is a very confusing condition and is extremely costly in GP time so any improvement in the speed of diagnosis and the replacement of cow's milk with an appropriate alternative formula would be extremely beneficial both the patients and the NHS budgets.

Different types of CMA

• IgE mediated cow's milk allergy
• Non IgE mediated, non-allergic cow's milk intolerance
• Lactose intolerance
NB primary lactose intolerance is very unusual in the first year of life.

Most clinical presentations of CMA are mild to moderate, non IgE mediated cow's milk intolerance. However there is a 10% disconnect between parent reported allergy and challenge-verified prevalence – probably because so much CMA is non-IgE mediated. Challenges (these may need to be supervised) should be performed much earlier in GP visits to establish the type of CMA. However, anaphylaxis is rarely the first presentation of cow's milk allergy. (GPs should consult the guidelines mentioned above.)

In diagnosing CMA the child's and the family's history is vital – not just of the immediate family but of grandparents, cousins etc. Attention needs also to be paid to combinations of symptoms – not just gastroenterological but skin, respiratory etc. Children should be put on an appropriate formula early – a much cheaper option in the long run than repeat doctor visits and a possible triggering of the allergic march.

Within tertiary care more cooperation is needed between gastroenterologists and allergy specialists.

Other conditions in which CMA is relevant

• EGIDS - Eosinophilic gastrointestinal diseases.
Uncommon but on the increase. Milk is the commonest allergen involved – usually both IgE and non IgE mediated.

• FPIES
Milk is the commonest trigger. Onset – 2–3 months. Symptoms mimic acute sepsis and the median diagnosis time is three acute episodes.

• Severe non IgE mediated allergy
Most common symptom, eczema.

• Allergic proctocolitis.
Usually occurs in first months of life in breast-fed babies. Symptoms, blood and mucus in stools.

• Allergic Gut Dysmotility
Symptoms: reflux, refusal of food, aversion to food, loose stools and/or constipation, abdominal discomfort, eczema, catarrh.

 

How to support the psychological needs of patients with food allergy and their families

Dr Rebecca Knibb, Health Psychologist, Senior Lecturer in the School of Life and Health Sciences at Aston University

Food allergy is very different to other chronic conditions in that, except when you have a reaction, you are perfectly well. Yet you are constantly at risk of a totally unpredictable life-threatening event. The result is anxiety, depression and stress for the allergic person but especially for the mothers of allergic children. (Mothers appear to be more affected – or maybe it is merely that they admit to it more.)

A study of 46 families at the Southampton Allergy clinic showed that 25–39% of the mothers and 17% of the fathers were much more stressed than the parents of non-allergic children while the children also had high separation anxiety – all of which affected their Quality of Life (QOL).

Anxiety was particularly high around diagnosis, risk management and, especially, anaphylaxis. And those who were least confident in managing the risk were the most stressed. Confidence in managing was also significantly related to a better QOL.

Egg allergy appeared to be the most troublesome.

How to reduce the impact of allergy on the family's QOL.

Group support. Parents felt that even one group support workshop was helpful.

Self regulation model. Families were provided with an education package and were then telephoned every 2 weeks, for a 6 week period, by a nurse. Anxiety improved as did the level of fear surrounding a reaction.

Imperial College Parent support groups – facilitated by health care professionals. These were particularly helpful for those who were very anxious.

CBT (Cognitive Behavioural therapy) interventions

There is a good evidence base for the use of CBT in the treatment of anxiety and stress.

A trial of 11 mothers (5 active, 6 controls) using CBT interventions and questionnaires over a 12 week period (1 hour per week) reduced the stress and improved the QOL scores of the active group to the point that they matched the controls.

CBT was particularly helpful in addressing parental issues such as:

• Early bad experiences with reactions – were they to blame?
• Risk aversion – because of the early bad reaction
• But then guilt and anxiety at over-restricting the child
• Practising with auto-injector trainer pens
• Worry tree exercises
• Role playing with the child and with the child's friends
• Working to accept the situation rather than stressing over it
• Getting parents to understand the real rather than the perceived risk e.g.. the risk of dying from food allergy is the same as the risk of dying in a house fire.

A CBT therapist working with food allergy would need to understand the condition and the fears that attached to it, but experience to date would suggest that CBT could be very effective and that, while the most anxious parents might need one-to-one interventions, for most parents web-based exercises would probably be sufficient.

 

Warning, this may contain TRACES of common sense. Managing food allergen thresholds for public, regulators and the food industry

Dr Andrew Clark, Associate Lecturer and Consultant in Paediatric Allergy, Department of Allergy, Addenbrooke's Hospital

Donald Rumsfeld's famous 'known knowns, known unknowns and unknown unknowns' were particularly apt for Dr Clark's exposition on allergy and anaphylaxis for, as he pointed out, what we do not know, greatly exceeds what we do know...

For a start, anaphylaxis is not, of itself, a disease. It is merely a reaction at the extreme end of the spectrum. Moreover, there may be many factors which contribute to the seriousness of the reaction which may be neither physical nor directly related to the allergen.

All allergics are at risk but no one knows which allergics will suffer anaphylaxis; patients do not present with anaphylaxis but with varying symptoms which may – or may not – develop into anaphylaxis. So the medical challenge is to:

• Identify risk
• Protect against the risk
• Treat the reaction

But, there is little medical agreement on how. For example, in a FAAN study of 87 patients with anaphylaxis in 2012, 27 doctors could not agree on the their presentation.

Anaphylaxis develops gradually, but when do symptoms become anaphylaxis and therefore need treating? How do you assess the risk for allergics:
• the dose of the allergen?
• the route of exposure?
• the nature of the allergy?
• the individual's physiology?
• do previous reactions offer any guidance?
• is asthma a co-factor?

Thresholds (the amount of the allergen needed to trigger a reaction) can vary up to 10 times on different occasions depending on on co-factors. So a person might be able to tolerate an allergen on its own but not when contact with that allergen coincided with a co-factor. These can be broadly classified into:

Personal and partially predictable
• the person's own allergen threshold
• whether they are asthmatic and how well their asthma is controlled
• whether they have other food, drug, venom etc allergies

Extrinsic and unpredictable
• exercise pre or post contact with the allergen
• alcohol consumption
• medications
• infections
• menses
• sleep deprivation

The existence of co-factors may explain the variability of allergic reactions over time and may also explain shifting population thresholds. This is what Dr Clark's TRACE study is trying to address by establishing a population threshold for peanuts, but including co-factors. (For more on the study see TRACE study.)

However, there still remain a great many 'unknowns'.

• Phenotypes. Reactions to food, venom and latex are all quite different.
• We know that there are vascular changes during an allergic reaction (the heat of the face changes) but not how the allergen is distributed around the body.
• We don't know why one person has a digestive reaction, another a skin reaction, the third a wheezing/respiratory reaction.
• We know very little about adrenaline. (Information on how much to use has been extrapolated from studies on dogs...) We don't know what dose we should use or how often – or why it is sometimes ineffective.
• We really do not know what is the optimum needle length – and what about obese or anorexic patients?
• And as for other drugs - we do use other drugs but we really have no idea how, why and even if they work.

20 years of allergy research – a paradigm shift in philosophy taking place?

Dr Michael Perkin, Senior Lecturer and Honorary Consultant in Paediatric Allergy, St Thomas' Hospital

Twenty years ago, allergen management was all about avoidance; now it is all about inducing tolerance – when, and how, should we wean children to induce tolerance?

It is totally accepted that breast feeding is best but the benefits of 'exclusive breast feeding' in allergy avoidance are not so clear. Weaning, or the introduction of solid foods, is defined as 'to cease to be suckled by the mother'. But when?...

Government guidelines suggest weaning at around 6 months but that some foods should still be avoided. But in practice UK mothers start to introduce solids at around 3.5 months. (if you go back to 1990, 70% of British mothers had introduced solids at 3 months; if you got back to 1975, 50% had introduced them at 8 weeks.)

In reality, as regards the major allergens, at 8–10 months children eat very little fish or eggs and virtually no nuts.

However, the 2008 study of Jewish children in London and in Israel did change thinking on allergen avoidance/introduction. (Jewish children in Israel who eat peanuts as a weaning food had an extremely low incidence of peanut allergy whereas Jewish children in London who did not come into contact with peanuts at all had a very high incidence of peanut allergy.)

There are currently 8 DBPCTs going on looking at allergen exposure in infants including the:
• The EAT study – results due out next March
• The STAR egg trial
• The LEAP study - carried out over the last 5 years with results expected next year.

The EAT study looked at 1300 exclusively breast fed infants who were randomised at 3 months. The mothers continued to breast feed up to a year but from 4 months one group had 6 key allergenic foods introduced (rice, cow's milk, peanut, wheat, egg, fish and sesame), while the others did not.

The LEAP study has already suggested that even by 4 months 10% of babies are sensitised to peanuts while 5.4% of them are sensitised to one or more foods without ever having eaten them.

Managing anaphylaxis on a day to day basis

Sue Clarke, Health Visitor, Allergy Lecturer and Nurse Advisor to the Anaphylaxis Campaign

Sue is not only an anaphylaxis nurse but she is mother to a peanut allergic son (now at university) so there are few people better placed to advise the parents of allergic children.

As she said, the first diagnosis of serious allergy is extremely stressful and the first few months are a very steep learning curve covering:

• avoidance of the allergen
• recognising the symptoms of a reaction
• crisis management
• understanding all the names of the allergens and the unlikely places you may find them (almond essence in Bombay Sapphire gin, latex in condoms, milk in washing up liquid and Uniqlo clothing etc)
• what to use or eat instead
• understanding labelling
• shopping perils – cross contamination at the deli counter, for example

Eating out and eating with friends

They need to maintain vigilance at all times, always have emergency treatments ready and preplan. If eating in restaurants, go at unbusy times so that they can get the full attention of the staff.

Allergic preschool children

71% cow's milk allergic; 21% egg, 8% peanut.

In nurseries and play groups guard against contamination - an allergic child puts a toy in its mouth that has been covered with milk by another child.

Children need to learn to ask and to question their food as early as possible. They can learn to recognise their own allergens on packs, even if they cannot read – egg, nut, milk etc. Everyone who comes into contact with the child needs to be allergen trained.

20% of reactions occur at school so communication between the school and the parents is vital.

Activities need to be risk assessed and emergency medication (with the child's photo on top of the box) needs always to be in a safe place – but NOT a locked cupboard!

By the age of 11 at the very latest, every allergic child should be able to manage its own allergy. To help them, go through emergency plans very regularly and practice with the trainer pen. Involve friends in emergency procedures and in the trainer sessions.

Teenagers

Alcohol and drugs. It is very important that they understand that the use of either will not only affect their judgement but will speed up a reaction should they have one.

If they want to travel they need to learn the foreign words for all of their allergens, be careful of vaccinations (some still contain egg), ensure there are no peanuts on the planes, get insured and tell the insurance company about their allergies, carry spare food and learn to cook!

They also need to involve their friends in their care – regular training with a trainer pen – avoid complacency – know the signs of an impending reaction – always carry medical ID – and always make sure their phone is in credit!

First published December 2014

 

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