Advice for Parents

Advanced Medical Nutrition

www,cowsmilkallergy.co.uk

Awarded Paediatric Allergist of the Year (2007) by Allergy UK, Dr Adam Fox is one of the UK’s leading experts in paediatric allergy. He is consultant Paediatric Allergist at a leading London teaching hospital. He is also an expert advisor to the National Institute for Health and Clinical Excellence (NICE). He has extensive experience in the management of food allergy, eczema, asthma, rhinitis (hay fever) and conjunctivitis. Adam is a trustee and chair of the Allergy UK Health Advisory Board.

Dr Adam FoxMA (Hons), MD, MSc, MBBS, DCH, FRCPCH, FHEA, Dip. Allergy

Consultant & Hon Senior Lecturer in Paediatric Allergy, Evelina Children’s Hospital and Guy’s & St Thomas’ Hospitals NHS Foundation Trust

Dr David Mass B Med Sci, MBChB, MRCGP, DFFP, Dip. Allergy

General Practitioner

Dr David Mass is a GP with a specialist interest in allergy in a busy inner city NHS practice. He also maintains an out of hours commitment to Urgent Care work at the Royal Free Hospital as well as running his own private practice. Dr Mass developed specific interests in Sub-Lingual Immunotherapy, ENT and Dermatology during his Allergy Diploma at Southampton University and applies these clinical skills with a wide variety of allergy patients in his day-to-day practice. He is a member of the Royal College of General Practitioners and the British Society for Allergy and Clinical Immunology.

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Allergy UKAllergy UK is the leading national medical charity providing advice, information and support to people with allergies, food intolerance and chemical sensitivity. Allergy UK acts as the ‘voice’ of allergy sufferers, representing the views and needs of those affected by this multi organ disease. Allergy UK makes a difference through a dedicated helpline and network for sufferers. The charity provides invaluable information and guidance to empower sufferers so that they can manage their symptoms and receive appropriate diagnosis and treatment.

This report has been developed in partnership between Allergy UK and infant nutrition specialists Danone Baby Nutrition and Nutricia Advanced Medical Nutrition.

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Cows’ milk allergy (CMA) is a potentially serious condition that causes painful and distressing symptoms to young children, disrupts their family life and often requires repeated visits to the GP or specialist services. The good news is that with prompt diagnosis, treatment and expert dietary advice, CMA can be effectively managed and its impact reduced to a minimum.

However, for CMA to be treated promptly and effectively it must first be diagnosed. The longer the condition remains undiagnosed the more suffering it will cause, the more likely it is to interfere with family life, social activities and the greater the burden it will impose on our healthcare system.

It is regrettable therefore that lengthy and unnecessary delays appear to be commonplace in the diagnosis of CMA.

Evidence from a recent study1 and the findings of this report suggests that many children with CMA undergo months of treatment before the cause of their symptoms is finally recognised. Indeed, guidelines from the National Institute for Health and Clinical Excellence (NICE)2 have recently been published for the diagnosis of food allergies in young children. CMA is the most common food allergy among infants and young children3.

This report attempts to examine the reasons behind diagnostic delays in CMA. Through detailed surveys of parents and healthcare professionals, it offers a unique snapshot of current practice and management of CMA. These findings then form the basis of a series of recommendations on how diagnosis of CMA could be improved.

In 2012, Allergy UK surveyed parents of children with cow’s milk allergy to better understand CMA and their journey to diagnosis. This report summarises those findings and is aimed at parents and produced in partnership between Allergy UK and infant nutrition specialists Danone Baby Nutrition and Nutricia Advanced Medical Nutrition.

Published to mark the launch of an awareness campaign – ACT on CMA – we hope this report will help increase knowledge, understanding and better management of CMA.

The report’s key conclusions are:

• DiagnosticdelaysinCMAarecommon and often lengthy

• AwarenessofCMAislowamongboth healthcare professionals (HCPs) and parents

• SymptomsofCMAareoftentreated in isolation with no link being made to the underlying allergic cause

• CMAcontinuestocausemuchdistress and disruption to family life.

On the basis of these conclusions we offer a three-tiered call to action. We believe it is time to ACT on CMA by raising Awareness; helping parents to Connect the symptoms together; and Take action to consider the link to CMA, and speak to their Healthcare Professional if concerned.

In this way we hope that the advances in our knowledge and understanding of CMA will be accompanied by swifter diagnosis, more effective management and a genuine improvement in the lives of the children and families it affects.

Dr Adam Fox Dr David Mass

Executive SummaryE

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IntroductionIThis report aims to increase awareness of CMA among parents.

It is published in response to evidence that many children with CMA face lengthy and avoidable delays in the diagnosis of their condition1.

These delays increase the distress caused by the symptoms of CMA, put unnecessary stress on family life and impose a considerable burden on healthcare resources1.

In order to identify the causes of these diagnostic delays, a series of surveys of parents and Healthcare Professionals (HCPs) have been conducted to gain a greater insight into how CMA is currently managed in the UK.

The results show that while the symptoms of CMA are well documented, often both parents and their HCPs currently fail to realise that cows’ milk may be the cause. In order to address these issues Allergy UK, in partnership with infant nutrition specialists Danone Baby Nutrition and Nutricia Advanced Medical Nutrition, have launched an awareness campaign – ACT on CMA.

The campaign aims to increase knowledge and understanding of CMA, speed up diagnosis and improve the management of this distressing and debilitating condition.

CMA is the most common food allergy among infants and young children3. It affects between 2 and 7.5 per cent of infants4, although up to 15 per cent may exhibit symptoms suggesting CMA at some time3.

CMA usually develops in children when cows’ milk is first introduced into the diet either in formula or at weaning, although it can also appear in infants who are exclusively breast fed, due to cows’ milk proteins from the maternal diet passing to the infant via breastmilk.

Broadly speaking there are two types of CMA5,6:

• Immediate or IgE-mediated allergy – symptoms typically begin within minutes of exposure to cows’ milk protein.

• Delayed or non-IgE-mediated allergy – symptoms typically begin several hours or even days after exposure to cows’ milk protein.

Some cases of CMA may show mixed features of both types.

What is CMA?W

This report has been developed in partnership between Allergy UK and infant nutrition specialists Danone Baby Nutrition and Nutricia Advanced Medical Nutrition.

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A revealing picture of current awareness and understanding of CMA has emerged from a series of surveys conducted in early 2012 by Allergy UK and by independent survey panels.

These surveys included:

• 1,000 parents of children under the age of one7

• 328 parents of children diagnosed with CMA within the past three years8

• 250 HCPs; 150 GPs and 100 Health Visitors from an independent survey panel9

The key findings from these surveys are summarised in Table 1.

Current awareness and understanding of CMAC

“Parents see their child every day and are very good at spotting early symptoms of CMA, even if they don’t know what is causing them. They are naturally very frustrated if they feel these concerns are not being taken seriously.”

“These results emphasise the severe impact CMA can have on the child’s family life. Should a diagnosis be missed, everyday life and social activities often become a chore and impact on the child’s and family’s quality of life. The uncertainty while waiting for a diagnosis can be a desperate time for the parents. Once the diagnosis has been made, then at least you know what you are dealing with and can do something about it.”

“ Dr Adam Fox

“ Dr David Mass

Parents

Awareness/understanding

• Although75%ofparentsofchildrenunderoneyearwereawareofCMA,ofthose,50%couldnotidentifyanysymptoms7.Inaddition,only14%ofparentscorrectlyidentified CMA as a reaction to the protein in cows’ milk, with three quarters of parents mistakenly thinking it was an allergy to lactose7

Diagnosis • 41%ofcaseswaitedmorethan3monthsfordiagnosis8 • Theaveragetimefromappearanceofsymptomstosuccessfuldiagnosiswasalmost

5 months8

• Nearlyoneinfive(19%)parentshadvisitedtheirGP10timesormorebetweenpresenting their child’s problems and diagnosis of CMA8

• 74%ofparentswereunsatisfiedwiththespeedofdiagnosis8

The perceived impact on HCPS and parents

• 72%saidCMAhadhadanegativeimpactonfamilyholidays8

• 58%ofparentsfeltthattheylostqualitytimewiththeirchildren8

Support • 92%ofparentsfeltthattheyrequiredmoresupportintheperiodbeforediagnosis8

Information • 70%ofparentsusedanonlinesourcefortheirfirstportofcallforhelp8

Table 1 – Survey findings

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Parents may not realise that their child’s symptoms are related to cows’ milk. Indeed, thesurveyfound75%ofparentssaidtheirchildhad experienced one or more of the symptoms ofcows’milkallergy,butanoverwhelming70%of these parents had never considered it could be connected to an allergy7.

Many HCPs appear to find CMA a difficult condition to diagnose. This is partly due to the fact that it causes a variety of symptoms7, which may occur in different combinations, and due to the length of time that it may take for symptoms to appear in delayed reactions.

The common symptoms of CMA are listed in Table 2. According to the NICE guidelines on food allergies in children and young people, allergies such as CMA should be considered in any child or young person who has one or more of the symptoms listed2. It is important to recognise, particularly with the delayed onset form of CMA, that although the symptoms shown in Table 2 can be indicative of this condition, they are also associated with many, more common disorders. Milk allergy is more likely to be considered by your HCP if symptoms are persistent, do not respond to treatment, and more than one symptom is present.

The awareness of CMA among the general population is higher than it once was, but there is still an enormous confusion between

allergies and intolerances and different types of allergies, such

as immediate allergy and delayed allergy.

Dr Adam Fox

These survey results highlight the need for better and more

accessible information on CMA. Anything that increases awareness of this condition is

likely to be beneficial to day-to-day practice.

Dr David Mass

Nearly one in five (19%) parents had visited their GP 10 times or more between presenting their child’s problems and diagnosis of CMA8

Common symptoms of CMA2,10

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“The consequences of undiagnosed cows’ milk allergy are that the child will continue to have completely unnecessary symptoms. This can go on for some considerable time and have an enormous impact on the whole family. There is also a big health economic impact because these children will continue to go to the GP and continue to require medical services.”

“ Dr Adam Fox

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Immediate CMA Delayed CMA

Urticaria – reddening of the skin or itchy rash similar to nettle rash

Gastro-oesophageal reflux – causing crying, back arching and vomiting after feeds

Angioedema – swelling of lips, face or around the eyes

Diarrhoea or constipation

Rhinitis – runny nose Abdominal pain

Vomiting Eczema

Diarrhoea Severe colic

Wheezing Refusing food

Anaphylaxis – sudden development of wheezing, cough, shortness of breath immediately after exposure to cows’ milk protein

Faltering growth

Table 2 – Common symptoms

Adapted from NICE guidelines2

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This report has been developed in partnership between Allergy UK and infant nutrition specialists Danone Baby Nutrition and Nutricia Advanced Medical Nutrition.

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Consequences of CMACThere is no doubt that CMA can be extremely unpleasant and significantly affects the quality of life of both the child and his or her immediate family. This fact is clearly recognised in the medical literatureandalsobythe60%ofHCPsinthesurveyresults who acknowledged the emotional distress CMA causes for the parents9.

Our survey results (Figure 1) show that CMA has a negative impact on sleep patterns, social life, ability to work and family life.

If the child continues to suffer symptoms and/or is placed on a nutritionally inadequate exclusion diet then there is a significant risk of impaired growth and development11.

Children with CMA are also likely to be prone to the ‘allergic march’ of other allergic conditions. Children with CMA have a higher than average risk of developing conditions such as other food allergies, allergic asthma, hay fever and eczema12.

The seven months it took for our daughter to be diagnosed with CMA was a terribly stressful time for our whole family. We just didn’t know what was wrong with her, whether she was ill or whether we were doing something wrong. She was crying all the time, being sick and refusing to eat.

We were taking her to the GP nearly every week and trying all sorts of different remedies. Nothing seemed to work for very long. Finally the GP suggested she might have a food allergy and referred us to a specialist. While we were waiting for the referral to come round we started to exclude milk from my daughter’s diet and it seemed to help, so it wasn’t a huge surprise when the diagnosis was made. It was still a relief though.

The negative impact on quality of life80%

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holidaysChild’s social

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ability to goto work

Child’s sleep

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Allergy NOT intolerance2AAlthough the terms allergy and intolerance are often used interchangeably, they are not the same thing and occur due to very different mechanisms. Milk allergy occurs when the child’s immune system becomes activated by the protein within the milk. Food intolerance, on the other hand, does not involve the immune system and describes a different type of adverse reaction. It can be a reaction to the lactose (milk sugar) in milk due to lack of the enzyme needed to digest it. People who lack the enzyme lactase, needed to digest the milk sugar, can suffer symptoms of diarrhoea, bloating and wind as the undigested lactose passes into the lower gut. Some of the confusion between conditions arises as HCPs sometimes refer to delayed type milk allergy as milk intolerance.

Figure 18

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Specialist’s perspectiveSDiagnosis of CMA depends on taking a good, allergy-focused clinical history and the person who should ideally be doing that is the GP. However, there’s no doubt that diagnosis of delayed CMA is difficult because of the subtlety of the presentations and the huge range of symptoms and severity of those symptoms.

The consequence of undiagnosed cows’ milk allergy is that the child will continue to have completely unnecessary symptoms. This can go on for some considerable time and have an enormous impact on the whole family. There is also a big health economic impact because these children will continue to go to the GP and continue to require medical services.

Dr Adam Fox

Making the link to cows’ milk

MThe key to the diagnosis of CMA, especially delayed CMA, is in making the link between the condition’s diverse and often subtle symptoms and the cows’ milk protein that is causing them.

For this to happen, both parents and HCPs must ACT. ACT stands for:

We believe a raised awareness among parents and healthcare professionals of CMA will help reduce delays in the journey to diagnosis.

Better communication between parents and HCPs will allow both to work together towards earlier recognition of CMA symptoms. Once again, raised awareness is an important part of allowing this to happen.

We believe that informed and observant parents are more likely to make the link between their child’s diet and the symptoms that may follow several hours later. Health visitors and community nurses who have received training in CMA will be better placed to investigate symptoms and raise concerns.

GPs who suspect CMA and who are aware of the NICE guidelines should be more likely to investigate further when a first-line treatment for eczema or reflux does not achieve the required results.

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This report has been developed in partnership between Allergy UK and infant nutrition specialists Danone Baby Nutrition and Nutricia Advanced Medical Nutrition.

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The GP’s perspectiveGTo reduce the delay in diagnosis of CMA means that we have to think about the condition sooner and in a structured way.

It is a difficult condition to diagnose and I’m sure there is an enormous amount of undiagnosed CMA within our practice. These will be children receiving treatment for eczema or constipation and we just haven’t put two and two together to realise that this might have something to do with cows’ milk. The link hasn’t been made.

The whole of the practice team plays a role in linking a child’s symptoms to the milk that may be causing them. For instance, the health visitor plays a key part in the diagnosis of CMA because they do the routine baby checks and the baby clinics. They will pick up the severe colic, the failing to thrive and the growth problems. They can then make the link to cows’ milk and flag these concerns up to the GP.

We can’t expect delayed CMA to be diagnosed as quickly as immediate CMA, as it is important to work through a list of potential causes for the symptoms which are shown, to make sure that an accurate diagnosis is reached. We don’t want to cause unnecessary anxiety in the parents of every child who presents with common conditions such as eczema and reflux.

The symptoms of CMA can be painful and disruptive to children, so the quicker we can get a diagnosis the better. A delay in diagnosing CMA will affect the child’s health and development, which has a knock-on effect on the quality of family life. Therefore, it is very important to consider the diagnosis early.

Dr David Mass

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Information and supportIThere is a clear need for more support and information for parents of children with CMA. More than a third of the parents of children with CMA said that the information they currently receive (from HCPs) is inadequate8. This is recognised by HCPs,with77%ofHCPsagreeingthattheywouldbe better placed to give better support if they had a greater confidence and knowledge of the condition9.92%ofparentsfeltthattheyrequiremore support in the period before diagnosis8.

Unfortunately,mostparents(70%)currentlylookfirstto the internet, rather than their primary care team, when searching for information on CMA8.

The danger here is that while there is undoubtedly a lot of good online information about CMA, there may also be much that is anecdotal, misleading or plain wrong. Clearly GPs have a role here to direct parents towards the most trustworthy online informationsources.Currently,only39%ofGPsattempt to do this9.

It’s interesting that the survey found a big difference of opinion between GPs and parents on the

value of online information. Online information can certainly be helpful for parents, but it all depends on the quality of that information. GPs have

a role in directing parents towards the better online resources such as those

provided by the allergy charities.

Dr Adam Fox

“It is vitally important that parents have access to information on CMA that they can trust. It is the role of organisations like Allergy UK to ensure that reliable, up to date information, written by specialists in the field of allergy is easily available. This enables parents to make informed choices about the condition and how to manage it.

Our survey has shown that up to 70% of parents use an online source as their first port of call for help. We know information available on the internet is not always from trustworthy sources, which can be a potential minefield for the parent of an allergic child in knowing where to turn.

It can be a very frustrating and worrying time for parents; better understanding about CMA and support for those parents with an allergic child is the first step in getting help.”

“ Lindsey McManus Deputy Chief Executive Allergy UK

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Table 3 – Importance of clinical history

Once CMA is suspected, a thorough examination of the child’s clinical history is recommended. The NICE guidelines2 suggest asking:

• Doesthechildorimmediatemembersofhisor her family suffer any allergic diseases?

• Whatarethepresentingsymptoms?

• Whendidthesymptomsstart?Onweaningor other change of diet?

• Timefromingestionofmilkproteintoonsetof symptoms?

• Quantityofmilkrequiredtocausesymptoms?

• Dothesymptomsoccuroneveryexposure?

• Responsetoprevioustreatmentofsymptoms – e.g. for eczema or reflux?

• Responsetoeliminationandreintroductionof suspected food?2

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This report has been developed in partnership between Allergy UK and infant nutrition specialists Danone Baby Nutrition and Nutricia Advanced Medical Nutrition.

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“The findings of the surveys have highlighted the seriousness of CMA, and we support the call to action outlined in this report.”

“ Jim Bennett Chief Executive Officer Allergy UK

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It is time to ACT on CMAIWe are calling for a three-tiered approach to reducing the diagnostic delays. We believe diagnosis of CMA should concentrate on:

Awareness of the symptoms – improved awareness of CMA among parents and healthcare professionals will help raise questions over possible symptoms and improve the flow of information from parent to GP and specialist.

Connect the symptoms together – the diverse symptoms of CMA are often treated individually without the connection being made to the allergic cause. As the most common food allergy among infants and young children3 CMA may play a significant role in the cases of many children currently being treated for constipation, eczema or recurrent diarrhoea. Parents and HCPs should make the connection between these symptoms and look to see whether they can be linked to cows’ milk protein in the diet (see Table 3).

Take Action – could it be CMA? – once the link to CMA has been made, parents should take the action listed in Table 4.

Table 4 – Take actionParents

If you think your child may have CMA:

• ConsultyourGPortellyourhealthvisitor

• Visitwww.cowsmilkallergy.co.ukformoresupportandinformation

• ReadtheNICEGuidelineonFoodAllergyinChildrenandYoungPeopleforpatientsandcarers(PDF) www.nice.org.uk/nicemedia/live/13348/53219/53219.pdf

• Visitwww.allergyuk.orgorcallthehelpineon01322619898

ConclusionCOnce diagnosed, CMA can be managed effectively, which means it will have less impact on the lives of the children it affects and their immediate families. However, our surveys suggest that diagnosis is often subject to unnecessary and unacceptable delays.

ACT on CMA is aiming to raise this awareness. We hope that better informed parents will be able to recognise the early signs of CMA in their children and make the connection to an allergic cause. Better informed healthcare professionals will be able to recognise the milk protein trigger and follow the NICE guidelines.

We hope that this will result in more children with CMA entering the care pathway for food allergy at a much earlier stage. We believe that earlier diagnosis followed by prompt and effective care will reduce the child’s symptoms, ease the pressure on families and reduce the financial burden on the healthcare system.

Dr Adam Fox Dr David Mass

Further information and supportFAllergy UK, Nutricia Advanced Medical Nutrition and Danone Baby Nutrition provide information, advice and support to parents who have an infant with CMA.

For Parents

ACT on CMA campaign: www.cowsmilkallergy.co.uk

Allergy UK: 01322 619898 www.allergyuk.org

*Important Notice: Breastfeeding is best for babies and provides many benefits. It is important that, in preparation for and during breastfeeding, you eat a healthy, balanced diet. Combined breast and bottle feeding in the first weeks of life may reduce the supply of your own breastmilk, and reversing the decision not to breastfeed is difficult. The social and financial implications of using an infant milk should be considered. Improper use of an infant milk or inappropriate foods or feeding methods may present a health hazard. If you use an infant milk, you should follow manufacturer’s instructions for use carefully – failure to follow the instructions may make your baby ill. Always consult your doctor, midwife or health visitor for advice about feeding your baby.

References

1. Sladkevicius E, Nagy E, Lack G, Guest JF. Resource implications and budget impact of managing cow milk allergy in the UK. J Med Econ 2010; 13(1):119–28.

2. NICE. CG116 Food allergy in children and young people: full guideline. London: NICE, 2011. Available at: http: www.nice.org.uk/ [Accessed: April 2012].

3. Høst A. Frequency of cow’s milk allergy in childhood. Ann Allergy Asthma Immunol 2002; 89(6 Suppl 1):33–7.

4. Hill DJ, Firer MA, Shelton MJ, Hosking CS. Manifestations of milk allergy in infancy: clinical and immunologic findings. J Pediatr 1986; 109(2):270–6.

5. du Toit G, Meyer R, Shah N, Heine RG, Thomson MA, Lack G, et al. Identifying and managing cow’s milk protein allergy. Arch Dis Child Educ Pract Ed 2010; 95:134–44.

6. JohanssonSGO,BieberT,DahlR,FriedmannPS,LanierBQ,LockeyRFet al. Revised nomenclature for allergy for global use: report of the Nomenclature Review Committee of the World Allergy Organization, October 2003. J Allergy Clin Immunol 2004; 113:832–6.

7. Independent survey panel of CMA awareness among 1,000 parents of children under one. 2012. Data on file.

8. Allergy UK survey of CMA awareness among 328 parents of children diagnosed with CMA. 2012. Data on file. 9. Independent survey panel of CMA awareness among 250 HCPs; 150 GPs and 100 Health Visitors. 2012. Data on file.

10. Vandenplas Y, Brueton M, Dupont C, Hill D, Isolauri E, Koletzko S, et al. Guidelines for the diagnosis and management of cow’s milk protein allergy in infants. Arch Dis Child 2007; 92(10):902–8.

11. Christie L, Hine RJ, Parker JG, Burks W. Food allergies in children affect nutrient intake and growth. J Am Diet Assoc 2002; 102(11):1648–51.

12. Santos A, Dias A, Pinheiro JA. Predictive factors for the persistence of cow’s milk allergy. Pediatr Allergy Immunol 2010; 21(8):1127–34.

The views expressed in the report are solely those of the authors and are not necessarily those of Allergy UK, Danone Baby Nutrition or Nutricia Advanced Medical Nutrition.

Date of Preparation: June 2012