Network Health Digest - Aug/Sept 2017

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NETWORK HEALTH DIGEST The Magazine for Dietitians, Nutritionists and Healthcare Professionals

NHDmag.com

August/September 2017: Issue 127

CROHN’S DISEASE Nutritional Management in Children ADULT FOOD ALLERGY CMPA MANAGEMENT VITAMINS AND MINERALS IMD - LOW PROTEIN DIETS

Introducing our new 'last word' column - p51

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NHD0816

FROM THE EDITOR

WELCOME Emma Coates Editor

Emma has been a registered dietitian for nine years, with experience of adult and paediatric dietetics. She specialised in clinical paediatrics for six years, working in the NHS. She has recently moved into industry and currently works as Metabolic Dietitian for Dr Schar UK.

The term ‘legend’ is used extensively in conversation these days. It is bandied about as a term of admiration or extreme approval for the qualities of anything from an actor’s performance in film, to a body of work, or sporting achievements.

Perhaps more relevant to this Welcome, is the meaning where someone achieves legendary fame through extensive work and dedication to a specific field. In this issue, we bring you several contributions from dietetic legends - and I do not think that is an over exaggeration!

Pat Portnoi and Professor Anita MacDonald bring us an update on the 2016 international clinical guidelines for the management of classical galactosaemia, including diagnosis, treatment and followup. Both Anita and Pat have dedicated 57 years between them to patient care and research, with countless publications and contributions to nutrition and dietetics as a profession.

With 25 years in nutrition research and expertise in maternal and infant nutrition, Simon Langley-Evans is Chair in Human Nutrition and Head of School of Biosciences at the University of Nottingham. This month he discusses the current evidence and recommendations for maternal obesity in his Prof Blog.

Our very own legend, Ursula Arens RD has been a writer and columnist for over 25 years. In her Face to Face column this month, she discusses the career and thoughts of Dr Angela Madden, Nutrition and Dietetics Lead and the University of Hertfordshire. We also have further contributions from Dr Emma Derbyshire, an award winning and vastly experienced public health nutritionist. In addition to her regular Food for Thought column, Emma writes about the modern life phenomenon of feeling Tired all the Time (TATT).

We are very excited to welcome some legends in the making who have taken on our ’end’ column in each issue. Dietitian’s Life is going to be put together by rising stars on social media, Louise Robertson and Sarah Howe. Both specialise in inborn errors of metabolism and work at the Queen Elizabeth Hospital in

Birmingham. They will be sharing a whole range of nutritional and dietetic insights in their new column.

Our regular contributor, Maeve Hanan, discusses cows’ milk protein allergy this month, including current recommendations for treatment and management. Maeve’s article has been peer reviewed by leading expert on food allergy Dr Rosan Meyer, Paediatric Research Dietitian at King’s College, London. Another expert in her field, Dr Isabel Skypala, Consultant Allergy Dietitian at the Royal Brompton and Harefield NHS Foundation Trust, takes us through key aspects of adult food allergy and the current evidence.

Kate Roberts RD gives an insightful case study detailing the treatment and management of a teenage boy requiring home enteral feeding due to Duchenne’s muscular dystrophy, while award winning and multi-talented Priya Tew RD also returns with an overview of vitamin and mineral supplements in childhood.

Our IMD Watch article comes from Suzanne Ford, Specialist IMD adult dietitian, who this month talks us through the low protein diet in metabolic disorders.

And it doesn’t stop there, as Specialist Paediatric Gastroenterology Dietitian, Rachel Wood, shares her experience and insights in our Cover Story on the nutritional management of Crohn’s disease in childhood.

So there we have it, proof that NHD is written by legends and is an essential resource for any dietitian or nutritionist.

Emma

www.NHDmag.com August/September 2017 - Issue 127

3

The only preterm post-discharge formula to contain prebiotic oligosaccharides

For formula-fed infants at greatest risk, including preterm infants, the World Health Organization (WHO) Safe Preparation Guidelines recommend sterile liquid formulas over powder formulas.3

Clinically proven to increase bifidobacteria in the gut and result in softer stools, more consistent with breastfed infants.1,2

IMPORTANT NOTICE: Nutriprem 2 is a food for special medical purposes for the dietary management of preterm and low birthweight infants. It should only be used under medical supervision, after full consideration of the feeding options available including breastfeeding. Suitable for use as the sole source of nutrition for infants.

References: 1. Mihatsch W et al. Acta Pediatr 2006; 95: 843-848. 2. Boehm G et al. Arch Dis Child Fetal Neonatal Ed 2002; 86: F178-81. 3. World Health Organization. Safe preparation, storage and handling of powdered infant formula [Online] 2007. Available at: http://www.who.int/foodsafety/publications/micro/pif_guidelines.pdf (Accessed September 2016).

11 COVER STORY

CONTENTS

Crohn's disease: Nutritional management in children 6

News

8

Face to Face

33 IMD WATCH Low protein diets

Latest industry and product updates

With Dr Angela Madden, Nutrition and Dietetics Lead, University of Herts

16 ADULT FOOD ALLERGY On the increase in UK and across Europe

38 Galactosaemia

New guidelines 43 Case study: enteral feeding

In Duchenne's muscular dystrophy

48 PROF BLOG Obesity during pregnancy

19 Vitamin & mineral supplements

Are they needed in children?

22 Tired all the time generation

Alternative ways to re-energise

25 COWS' MILK PROTEIN ALLERGY

50 Event, courses & dieteticJOBS

Dates for your diary

and job opportunities

51 Dietitan's life

The last word

Nutritional management

by Louise Robertson

Copyright 2017. All rights reserved. NH Publishing Ltd. Errors and omissions are not the responsibility of the publishers or the editorial staff. Opinions expressed are not necessarily those of the publisher or the editorial staff. Unless specifically stated, goods and/or services are not formally endorsed by NH Publishing Ltd which does not guarantee or endorse or accept any liability for any goods, services and/or job roles featured in this publication. Contributions and letters are welcome. Please email only to info@networkhealthgroup.co.uk and include daytime contact phone number for verification purposes. Unless previously agreed all unsolicited contributions will not receive payment if published. All paid and unpaid submissions may be edited for space, taste and style reasons.

Editor Emma Coates RD Publishing Director Julieanne Murray Publishing Editor Lisa Jackson Publishing Assistant Katie Dennis Special Features Ursula Arens News Dr Emma Derbyshire Design Heather Dewhurst

Advertising Richard Mair Tel 01342 824073 richard@networkhealthgroup.co.uk Phone 0845 450 2125 (local call rate) Fax 0844 774 7514 Email info@networkhealthgroup.co.uk www.NHDmag.com www.dieteticJOBS.co.uk Address Suite 1 Freshfield Hall, The Square, Lewes Road, Forest Row, East Sussex RH18 5ES

@NHDmagazine ISSN 2398-8754

www.NHDmag.com August/September 2017 - Issue 127

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NEWS

FOOD FOR THOUGHT

Emma heads Nutritional Insight Ltd, an independent consultancy to industry, government and PR agencies. An avid writer for academic journals and media, her specialist areas are maternal nutrition, child nutrition and functional foods. www.nutritionalinsight.co.uk @DrDerbyshire

If you have important news or research updates to share with NHD, or would like to send a letter to the Editor, please email us at info@network healthgroup.co.uk We would love to hear from you.

BruceBlaus

Dr Emma Derbyshire Independent Consultant

OSTEOPOROSIS PREVENTION: A WHOLEFOODS APPROACH Osteoporosis is a silent and progressive disease affecting the density and quality of bone which, in turn, increases fracture risk. Figures from the International Osteoporosis Foundation reveal that around one in three women and one in five men are at risk of an osteoporotic fracture with wrist, hip and spine fractures being most common.

The underpinning causes of osteoporosis are indeed multifaceted with hormone milieu, genetic and environmental factors all having a role to play. Modifiable lifestyle factors also have a valuable role to play in osteoporosis prevention, where the whole diet can play its own part.

A new paper published in EFORT Open Reviews looked at evidence from 20 trials evaluating the role of wholefoods on bone health. Whilst it is well recognised that calcium and vitamin D are important bone nutrients, less is known about the roles that other aspects of the diet can play. Some of the main findings include the following: • Fruit and veg continues to be under consumed, yet also provides important micronutrients and phytochemicals that are useful for bone remodeling.

• There is emerging evidence that dried fruits, such as prunes, could help to support bone health, mainly by providing meaningful amounts of vitamin K, manganese, boron, copper and potassium.

• It appears that just 50g prunes daily could help to reduce bone breakdown after six months when eaten by postmenopausal women with osteopenia.

• Nutrients such as selenium, copper and iron may have roles in bone health too.

• We should aim to eat a healthy, varied and balanced diet throughout the lifespan, but especially during sensitive windows of bone turnover.

The paper was aimed at orthopaedic surgeons who would like to better understand the role of nutrition in osteoporosis prevention. When taken together, a spectrum of nutrients are needed for bone health, not just calcium and vitamin D. Alongside this, phytonutrients and bioactives in foods also appear to have an increasingly important role to play. So, a wholefoods approach, rather than singling out certain vitamins and minerals, seems to be a more assured way of preventing osteoporosis.

For further information, see: Higgs J, Derbyshire E and Styles K (2017). Nutrition and osteoporosis prevention for the orthopaedic surgeon: a wholefoods approach. EFORT Open Reviews 2; pg 300-308.

SUPPLEMENTS FOR SCHIZOPHRENIA? It has been shown that certain vitamins and minerals may act as an ‘adjunctive’ (supporting treatment) to antipsychotics, possibly by helping to restore nutritional deficits, lower oxidative stress or altering neurological pathways. Now, a new paper has looked at which supplements, in particular, could be most effective.

Data from 18 randomised controlled trials was pooled (832 patients). Results showed that 6

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supplementation with B vitamins helped to significantly reduce psychiatric symptoms more than controls. No effects, however, were seen from antioxidants, minerals or inositol.

These are interesting findings indicating that B vitamin supplementation could act as a helpful adjunctive therapy to those diagnosed with schizophrenia.

For further information, see: Firth J et al (2017). Psychol Med Vol 47, no 9; pg 1515-27.

NEWS

PRODUCT/INDUSTRY NEWS

LEARN TO LOVE VEG IF YOU ARE BREASTFEEDING We know that what breastfeeding mums eat influences the flavour of the breast milk that she produces.

These ‘flavour exposures’, as such, can then modify the infant's acceptance and likeability of similarly flavoured foods. Now, new research takes this a stage further and looks at the timing and duration of flavour exposures.

Research carried out at the Monell Chemical Senses Centre in Philadelphia randomly allocated 97 mums and their infants to drink vegetable, beet, celery and carrot juices. They started to drink these for one month at two weeks, six weeks or 10 weeks after delivery, or for three months for two weeks after birth. A control group was asked to drink just water and avoid vegetable juices. Later on, when infants were seven to nine months old and foods were being introduced, their likability of certain flavours was assessed.

Results showed that even a brief ‘one month’ experience with vegetable flavours in mothers’ milk, starting from two weeks after birth, led to children taking to a carrot-flavour cereal better than others. It was also found that one month of exposure was sufficient and even more effective that three months of veg flavour exposures.

OATLY OAT DRINK BARISTA EDITION (formerly called Foamable Oat Drink)

a Totally dairy and soya free a 100% plant-based - cool for vegetarians and vegans

a Fortified with vitamins and calcium

a No added sugar a Low in saturated fat (0.3g/

100ml) and rich in unsaturated fat (2.7g/100ml) a Contains beta-glucan oat fibre

a A sustainable milk alternative For more information: www.oatly.com/hcp

To book your Company's product news for the next issue of NHD call 01342 824 073 So, even before solid foods are introduced, flavour exposures via breast milk can play a key role in infants’ later likability of similar flavours.

New mums should be aware that if they eat veg when they breastfeed, this may help their little ones to do the very same once they start eating solid foods.

For further information, see: Mennella JA et al (2017). American Journal of Clinical Nutrition Vol 106, no 1; pg 67-76.

TOMATOES FOR HEART DISEASE A new review in the Proceedings of the Nutrition Society has looked at whether tomatoes and related products really can help to reduce heart disease risk.

Results from in vitro studies and an evaluation of intervention trials was carried out.

In vitro findings showed that carotenoids in tomatoes could help to inhibit oxidation, lower inflammatory markers, prevent tumourigenesis, trigger apoptosis and improve intracellular communication. Results from intervention studies showed that lycopene could help to protect the cardiovascular system by lowering high-density lipoprotein (HDL) inflammation.

So, whilst we know that HDL is ‘good cholesterol’, it seems that tomatoes could further help to protect and shield this from inflammation. So, it seems that eating tomatoes appears to be good for HDL cholesterol too.

For further information, see: Thies F et al (2017). Proceedings of the Nutrition Society Vol 76; pg 122-29. www.NHDmag.com August/September 2017 - Issue 127

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F2F

FACE TO FACE Ursula meets: Ursula Arens Writer; Nutrition & Dietetics Ursula has a degree in dietetics, and currently works as a freelance nutrition writer. She has been a columnist on nutrition for more than 30 years.

8

Ursula meets amazing people who influence nutrition policies and practices in the UK.

DR ANGELA MADDEN Dietitian and Academic Nutrition and Dietetics Lead, University of Hertfordshire Co-author/editor: Oxford Handbook of Nutrition and Dietetics

Angela picks me up from Hatfield Station and we find a quiet café (except it is not: the music throbs; but as we are the only customers, our grumpy request for less volume is served, along with tea). Angela has had a dietetic career spanning many years in clinical practice, research and higher education: who better to interview for a cool and calm assessment of our profession?

Young Angela was very sciency, achieving A-levels in Biology, Chemistry and Physics, but developing her interest in food at home. “My mother was, and still is, an amazing cook, but I didn’t really appreciate it at the time. Eating at a friend’s house when a ready-meal was served made me aware of how lucky I was.”

Angela graduated in dietetics in 1982 from the University of Surrey.

She had really enjoyed her student placement at Addenbrooke’s Hospital in Cambridge, as well as a nutrition placement at the MRC Epidemiology Unit in Cardiff. “I was surrounded by great researchers but didn’t realise it at the time. Professor Archie Cochrane was one of many experts who worked in the unit while I was there.”

Her first job was at the Hammersmith Hospital in London. Although she was, of course, a basic-grade dietitian, it seemed like being thrown into the deep end of the profession. “The hospital had a postgraduate medical school, so many cases

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seemed complex, and many of the staff were academics. There was no Manual of Dietetic Practice or PubMed, so we often made clinical decisions about what to do on the basis of discussion between dietitians. But I enjoyed the challenges of work and living in London.”

After two years, Angela wanted a change, which a maternity cover post in Saudi Arabia promised and delivered.

The hospital was very different from NHS models of care, but very modern and well-funded. “I was wide-eyed and very interested in the different cultures and procedures, so I learnt a huge amount in a short time,” said Angela.

Electronic patient records were in place decades before their use in the NHS. Her next job was at the Royal Free Hospital in North London as a specialist dietitian in the liver unit. In addition to lots of clinical care, she was closely involved with many research projects and while sitting on an interview panel to find a PhD candidate, the other panellists realised that the best candidate was not the one sitting across the table, but the woman sat on the panel with them! The post offered gains, of course, but also much hard work and long hours of effort. After much perspiration and a little inspiration, Angela completed her doctorate on the assessment of nutritional status and body composition in patients with chronic liver disease in 1998.

A friend suggested becoming a lecturer for the Dietetics course at what was then the University of North London (now the London Metropolitan University). “I was nervous, but on the first day of my first lecture, a student gave me the biggest smile and then I knew I had made the right decision,” said Angela. The diverse students at North London were often feisty, but it was their enthusiasm and support that Angela enjoyed most.

In 2006, the University of Hertfordshire advertised for someone to set up an undergraduate Dietetics programme commissioned by the NHS in the East of England. Angela’s enjoyment of the challenges of living in London had waned.

Travel hassle and high house prices exceeded the metropolitan magic and leafy Hertfordshire became more appealing, so she took the plunge and applied for the job at Herts. The HCPC approved the three-year Dietetic course and Angela became the Subject and Lead for Nutrition and Dietetics, which now includes two BSc courses and related research activity.

There are currently about 60 students per year registered in Nutrition and Dietetics at Herts. These are interesting times for student recruitment, as changes in the demographic pool of 18-year-olds, withdrawal of NHS funding and Brexit, are all having an impact on the number of applications. The University of Hertfordshire was awarded ‘silver’ in the recent Teaching Excellence Framework (TEF) rankings, but Angela and her colleagues will be pedalling hard to achieve a better gold score in the next assessments.

We talk about students. Entry criteria for the Dietetics course are higher for dietetic students than those studying nutrition and require them to be well qualified in science and to demonstrate interpersonal skills suitable to work with patients. Angela is concerned that the subject of Dietetics is still female-dominated and might benefit from more diversity (note our

discussion is between two white, middle-aged females!). A minority of her dietetic students are male and/or come from other ethnic groups and she occasionally wonders whether we make them feel as welcome as possible within our profession. I ask her in contrary spirit, whether this matters - patients want competent professionals; does it matter what gender or race they are? Angela is so thoughtful and tactful and allows that we cannot fully answer that question.

But she feels that the dietetic profession might be sometimes held back by an excess of modesty and caution, and some greater diversity of thought and temperament could bring many benefits to propel the whole profession forward.

Dietetics, like all professions, has changed over the years with digital tools and fixes. There are so many benefits that none of us would do without.

But some blindness can creep in with constant online link-clicking, and information overload is a threat to being able to discern important and significant developments.

Angela clearly loves the research side of Dietetics and how this relates to practice. She is co-editor of the Oxford Handbook of Nutrition and Dietetics and constantly contributes to a wide diversity of publications on nutrition science.

But she is concerned that all dietitians should be critical thinkers and not just implementers of guidelines (NICE or otherwise). “Dietetics is not a pure science and the skill of the profession is understanding the many shades of grey between food intake and health,” says Angela.

“The best way to develop better understanding and support better professional practice, is to encourage open debate. But this is something that many dietitians tend to shy away from.”

For once, my argumentative side could not disagree. I was happy to think that future Dietetics graduates from the University of Hertfordshire would be combat-ready to fight for a better nutrition world.

If you would like to suggest a F2F date

(someone who is a ‘shaker and mover’ in UK nutrition) for Ursula, please contact:

info@networkhealthgroup.co.uk www.NHDmag.com August/September 2017 - Issue 127

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COVER STORY

CROHN’S DISEASE: NUTRITIONAL MANAGEMENT IN CHILDREN Rachel Wood Specialist Paediatric Dietitian in Allergy and Gastroenterology Therapy and Dietetics Rachel is Clinical Lead for Dietetic Allergy and Gastroenterology services in a tertiary centre for Paediatrics based at Central Manchester University Hospitals NHS Foundation Trust Royal Manchester Children's Hospital.

For full article references please email info@ networkhealth group.co.uk

Inflammatory bowel disease (IBD) can be defined as Crohn’s disease (CD) or Ulcerative Colitis (UC). Both conditions are of chronic inflammation and of unknown aetiology, although the causes still trigger much debate, as does whether or not the changing environment plays some part in the development of these diseases, including dietary changes, processed foods and the microbiome. However, in paediatric CD, the genetic component is much more dominant than in adults.1,2 The incidence of CD in children is on the rise worldwide, with an estimated prevalence of 58 in 100,000.3 The role of nutritional therapy as treatment is becoming even more popular.

CD can affect any part of the gastrointestinal (GI) tract; from the mouth to the bottom. Orofacial Granulomatosis (OFG) is linked to CD, as well as symptoms of frequent mouth ulcers, but the most common area to be affected by CD is the terminal ileum and right colon. CD is characterised by full thickness acute and chronic inflammation anywhere in the gastrointestinal tract; it can be patchy as well as having granulomas.2 This, as you can imagine, comes with a whole host of symptoms. In paediatric CD, symptoms can often be non-specific which can delay diagnosis. As well as the increasing prevalence, it appears that the classic ‘triad’ symptoms of abdominal pain, weight loss and diarrhoea are also changing.

DIAGNOSIS

Other symptoms can include lethargy, anaemia, poor appetite, weight loss and nausea/vomiting associated with eating; patients can become very low in mood. One of the most important factors in paediatrics is linear growth; not receiving the correct nutrition can impair this, as well as affect development if nutritional intake is not corrected.

Diagnosis is often around or during puberty, so ensuring the correct nutrition and treatment is vital to optimise growth and to ensure puberty is not delayed.

TREATMENT

Most paediatric centres are now using Exclusive Enteral Nutrition (EEN) as first line treatment in newly diagnosed Crohn’s patients.4 This comes with variation in the name as it is also known as Liquid Diet Therapy (LDT), or the Polymeric Diet (PMD).

There are three main consensus guidelines for the management of CD in Paediatrics: NICE clinical guideline for CD: management CG152, (2012), BSPGHAN guidelines produced in 2010 and the ECCO/ESPGHAN produced in 2014 all state that enteral nutrition should be used as first line treatment to induce remission.5,6,1 EEN is the complete avoidance of food for a period of six to eight weeks. The patient receives all of their nutritional requirements in the form of a ‘liquid’ diet. The aim of this is to induce remission, aid mucosal healing, reduce inflammation and provide optimum nutrition to promote growth and development.

There are many positive outcomes in using EEN as first line treatment for CD, but this does not come without its own challenges for patients and their families. We know as clinicians that

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PAEDIATRIC

Remission induced by Exclusive Enteral Nutrition (EEN) has been demonstrated in 80% of newly diagnosed children with CD and 58% in previously diagnosed children in a flare up . . .

EEN is highly effective at inducing remission; 8090% of children on EEN as seen in the systematic review by Day et al2 and in Knight et al.17 EEN also does not come with the complications of affecting bone density and delayed growth that steroids bring. However, many children just cannot adhere to EEN for the six- to eight-week period that is required, despite nasogastric tube (NGT) placement, which after the oral route would always be the next step before steroids.

Others try meticulously, but symptoms just don’t resolve, even with the combination of Azathioprine and, therefore, there is no choice than to escalate treatment.

Remission induced by EEN has been demonstrated in 80% of newly diagnosed children with CD and 58% in previously diagnosed children in a flare up and we know there are other positive factors including improved energy and mood. However, in practice this can be one of the hardest things you can ask a child or young person to do, mainly affecting their quality of life and social aspects around eating that they have missed out on for so long because of being unwell.16 A child presented at age 12 years with a variety of symptoms; loose stools up to five to seven times per day with mucous, but no blood, general lethargy with some aches and pains, low in mood and severe weight loss over a period of six months. Weight at assessment was 27.5kg, plotting just under the 2nd centile and height was 148cm plotting on the 50th centile.7 There was a reported 16% loss of body weight over a period of six months. This is significant weight loss and means that instead of tracking along the 25th centile and the 50th centile for height, which would be proportional, he dropped down across three centile lines, indicating a risk of refeeding syndrome.

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STARTING TREATMENT

EEN will be introduced slowly over a number of days, being mindful not to overfeed and daily monitoring of blood levels including phosphate, magnesium and potassium levels. This requires intense input from the dietitian and may delay how quickly the patient can reach their target volume of nutritional drinks and, hence, how quickly they can go home from the ward.

EEN commonly is done for six to eight weeks, although it is shown to have had improvements on mood and energy levels within the first seven to 10 days and inflammatory markers within 14 days, all of which continue to improve for over six to eight weeks.4 Although the initial improvements in symptoms and mood are seen within the first few weeks, it is important to inform the patients and families about the ongoing benefits of continuing with the EEN for the full six to eight weeks with the aim of complete remission. The consensus guidelines of ECCO/ESPGHAN1 advise that if a clinical response has not been induced by two weeks of EEN, then an alternative treatment should be commenced, indicating that if EEN is going to work, you will see this within two weeks.

A review half way into a patient’s treatment of EEN is a must to ensure that this is working for them and encouragement to call if no improvements are seen following discharge from the ward on their target volume. This prevents further delays to growth and development.

CHOICE OF FEED

Many years ago, Elemental Feeds (EF) were used as the EEN in treatment of CD. It was felt that the amino acid based elemental feed gave the gut good nutrition whilst resting it from the whole proteins that could aggravate

Manage

MALABSORPTION with

Cow & Gate Pepti-Junior is designed to be easy to digest and absorb for cases of malabsorption in infants. It is specially formulated to: Enhance digestion and absorption: - Extensively hydrolysed formula1 - 50% MCT2 Promote palatability: - Whey based3-5 Reduce osmotic load: - Carbohydrate as glucose polymers6 - Low osmolality (210 mOsmol/kg H2O) For further information contact our Healthcare Professional Helpline on 0800 996 1234 or visit www.eln.nutricia.co.uk References 1. Keohane PP et al. Gut 1985;26(9):907-13. 2. Bach AC, Babayan VK. Am J Clin Nutr 1982;36(5):950-62. 3. Mabin DC et al. Arch Dis Child 1995;73(3):208-10. 4. Pedrosa M et al. J Investig Allergol Clin Immunol 2006;16(6):351-6. 5. Miraglia Del Giudice M et al. Ital J Pediatr 2015;41:42.

6. Shaw V (ed). Clinical Paediatric Dietetics. 4th ed. Oxford: Wiley Blackwell, 2015.

Important notice Cow & Gate Pepti-Junior is a food for special medical purposes. It should only be used under medical supervision, after full consideration of the feeding options available including breastfeeding. Suitable for use as the sole source of nutrition for infants from birth, and as part of a balanced diet from 6 months.

PAEDIATRIC

Table 1: The composition of feeds available to use with CD Feed name

Emsogen (EF)

Elemental EO28 extra (EF)

Modulen (PF)

Alicalm (PF)

Ensure Plus/ Fortisip (PF)

Protein source

Amino acid

Amino acid

Whole protein

Whole protein

Whole protein

17% LCT/83% MCT

65% LCT/35% MCT

74% LCT/26% MCT

52% LCT/48% MCT

100% LCT

Fat source

the mucosal lining. Since then, it has been shown that a polymeric Feed (PF) is just as effective and more palatable which improves compliance; the mechanism we are not entirely sure of yet. A double blind randomised controlled trial comparing EF versus PF found that in 34 children who completed it, there was no difference in inducing remission of CD between the two choices of EEN, meaning that the earlier theory of avoiding certain food allergens was not correct, particularly when there had been no studies highlighting specific food as triggers.8 The Cochrane review9 also shows that there was no statistical difference found between EF and PF in any of the trials that were reviewed, which led to the ECCO/ESPGHAN guidelines stating that EEN feeds should be given orally and as whole protein feeds; unless there is a clinical reason not to use these, for example in cows’ milk protein allergy.1 14

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Modulen and Alicalm are whole protein feeds that are specifically for use in CD. They are marketed to contain the optimum amount of nutrients including lipids, with Modulen containing a natural anti-inflammatory factor.

Both these feeds come in powder forms and require making up to the required concentration, which can take time and energy. The benefits of the PF being whole protein are that they are much more palatable than the EF and you can add different flavours to the Modulen and Alicalm to add variety and improve compliance with taking the drinks. Modulen is a 1kcal/ml feed, which can mean large volumes of feeds are needed to be taken to meet full requirements compared to Alicalm (1.35kcal/ml) and Ensure Plus (1.5kcal/ml).

REQUIREMENTS

Estimated Average Requirements (EAR) should always be used for an EEN plan for a child. This

is the daily nutrient level estimated to meet the requirements of half the healthy individuals in a particular life stage and gender group.10 This is more effective than using the requirements per kilogram as you are aiming to get the individual back to a healthy weight for height and age.

Most studies fail to show that there is an increase in resting energy expenditure with active CD unless there is fever, so it is difficult to quantify increased requirements above base line level. BSPGHAN guidelines recommend EEN to meet 120% of EAR, but this is unrealistic and often unachievable.6 In clinical practice you have to be practical about the volumes of EEN you are advising a patient to drink: if on a daily basis it is too high, the child/young person is less likely to continue the treatment.

The 12-year-old boy mentioned earlier had an EAR of 2,247kcals/day.10 This equates to seven of the whole protein, ready to feed 1.5kcal/ml drinks (220mls) each day, whereas 120% of EAR would be over eight of the drinks per day.

Due to this child’s potential risk of refeeding and with all patients starting on the polymeric diet, the aim would be to reach the target volume of drinks on day three to four. Patients should be given the opportunity to take the EEN orally with the aim that the PF is much more palatable and negates the need for a NGT to meet targets. NGT placement can be distressing for the child, it also requires much more support and training and can be linked with more time off school, difficulties socialising and can affect quality of life. However, it can take the pressure off having to drink the entire target volume.11 The possibility of an NGT should always be discussed at the first review as even the unlikeliest of patients can often not tolerate the volumes expected with EEN. One study placed the NGT during endoscopy and feeds started after 12 hours, building up to target by day three, and then permitting oral intake as tolerated.12 There is much debate and no consensus on what other fluids are allowed during the period of EEN; one study reported 68% of respondents were allowed clear fluids (fizzy

drinks, ice and clear soup), 48% allowed boiled sweets, 39% allowed chewing gum and tea and coffee.4 One centre permitted 10% of intake as food, this is as suggested from Johnson’s study of partial enteral nutrition (PEE) and EEN that the anti-inflammatory effects aren’t seen if intake of food is continued and that although supplements are beneficial, it doesn’t suppress intestinal inflammation which is the key to remission.13 FOOD REINTRODUCTION AND REMISSION

Food reintroduction after EEN is another controversial area and every centre appears to introduce food slightly differently. Faiman’s retrospective cohort study in 201414 was the first to compare standard versus rapid food reintroduction with standard practice being a slow elimination diet to ensure remission is established for as long as possible. Faiman’s study was small and was unable to identify exact timings of relapse; despite this, it did show that there was no statistical significance between the five-week introduction and the three-day introduction.14 The rapid introduction means that the diet isn’t unnecessarily restricted for long periods which could be detrimental to the nutritional adequacy of the diet and hence the growth of the child.14 Following food, it is advised to continue with nutritional supplements alongside diet to aid continued remission. A retrospective study primarily focusing on Maintenance Enteral Nutrition (MEN) showed that remission rates at one year were 60% with MEN compared to 15% with no treatment. This study aimed for 25% of EEN intake per day for MEN and again found it effective compared to medications such as Azathioprine.15 This equates to one to two supplement drinks per day alongside diet.

CONCLUSION

Nutrition and enteral feeding plays a key role in the management of CD within Paediatrics, not only in inducing remission, but in maintaining remission as well, without the risks that are associated with other medications used within the disease management. The dietitian is therefore an important part of the gastroenterology multidisciplinary team. www.NHDmag.com August/September 2017 - Issue 127

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FOOD AND DRINK

ADULT FOOD ALLERGY Dr Isabel Skypala Consultant Allergy Dietitian, Royal Brompton & Harefield NHS Foundation Trust

Food allergy used to be a disease of childhood, but is now on the increase in adults. In 1994, a study reported that the prevalence of adult food allergy in the UK was 1.4%; 20 years later, 5.8% of UK adults in another study reported reactions consistent with an IgE-mediated food allergy.1,2 This is similar to Europe.

A dietitian for 38 years who established and leads the adult food allergy service, Isabel is also honorary Senior Clinical Lecturer at Imperial College and actively engaged in food allergy research.

A study of eight European countries reported an overall prevalence rate of 4.4% for diagnosed adult food allergy, ranging from 0.5% in Lithuania to 8.4% in Spain.3 Most recently, Turner et al reported an increase of 105% in food induced anaphylaxis in the 15 to 59 age group, with the mean age of fatal food induced anaphylaxis being 25 years.4 DIAGNOSIS

For full article references please email info@ networkhealth group.co.uk

16

Taking a detailed history of foods involved, symptom type and speed of onset is the key to determining whether these reactions are due to an IgE-mediated food allergy.5 The foods suspected should be confirmed as culprits by undertaking skin prick or specific IgE tests. But it is important to only test for foods implicated in the reaction because many adults who already have an allergic disease, such as eczema or allergic rhinitis, will often have specific IgE antibodies against many foods, so food sensitisation is not predictive of the development of a food allergy in adults.6 This is mainly due to pollen sensitisation (trees, grasses and weeds) causing positive tests to foods, such as tree nuts and peanuts, due to similarities between the allergen epitopes (binding sites) of pollens and food proteins.7 Another food which might be positive without relevance is milk, which rarely presents as an allergy in adult life, but many who have severe eczema often have specific IgE antibodies to milk.8 It is important that individuals with specific IgE antibodies against a food consumed

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regularly and without symptoms, continue to eat the food, so that allergen recognition will continue. Complete elimination of the food can result in non-recognition by the IgE antibodies; one study found that 19% of patients developed new immediate food reactions after initiation of an elimination diet, 30% of which were severe and usually milk and egg were the culprits.9 The risk of this occurring was unrelated to the level of specific IgE antibody and the authors recommended that strict elimination diets need to be thoughtfully prescribed, as they may lead to decreased oral tolerance. Where there is doubt about the diagnosis, e.g. if tests are negative in the face of a strong history, or the history is weak, but tests are positive, then an oral food challenge should be performed.10 CHILDHOOD ALLERGY TO MILK AND EGG

Allergies to milk, egg, wheat and soy usually resolve by the age of 18 years, with those having high levels of specific IgE antibodies being least likely to experience remission.11 Such patients will transition to the adult clinic, but should continue to be monitored as resolution may still occur. Molecular allergy testing with individual milk allergens Bos d 4 (alpha lactoglobulin), Bos d 5 (beta lactalbumin) and Bos d 8 (casein) can be useful; a level of 10IU/ml for casein had a 95% positive predictive value (PPV) for a positive oral food challenge to baked milk in one study, although other studies argue that a positive skin prick test to fresh milk

gives similar results.12,13 For eggs, acquisition of tolerance is associated with a decrease in specific IgE antibody to egg white and also to Gal d 1 (ovomucoid), a low level of which can be predictive of a resolving egg allergy.14 DOES PEANUT ALLERGY RESOLVE?

Peanut allergy resolution is more likely to occur in early childhood; in one study, 225 of children with peanut allergy experienced resolution by the age of four years15 and another study with a similar resolution rate found that most children outgrew their peanut allergy by the age of eight years.16 Adults reporting peanut allergy diagnosed in childhood should always be re-tested, as many were not robustly diagnosed as children and, in keeping with the advice at the time, were usually told to also avoid all tree nuts. However, only onethird of peanut allergic individuals will be allergic to one or more tree nuts17 and so, the need to avoid tree nuts should be individually assessed, especially as severe reactions are more frequent in teenagers and adults.18,19 Sensitisation to the primary peanut allergens Ara h (Arachis hypogaea) 1, Ara h 2 and Ara h 3 is usually acquired in childhood, so it is unlikely that adults will develop new-onset peanut allergy.20 One allergen, Ara h 2, has been shown to be the best predictor of the presence or absence of a peanut allergy; one study reported that an Ara h 2 level of 14.4kU/l had a 90% probability for a positive peanut challenge.21 However, other studies in different populations have shown different results; Eller et al reported that a level of 1.63kU/l for Ara h 2 had 100% specificity and 70% sensitivity.22 NEW-ONSET FOOD ALLERGIES IN ADULT LIFE

A retrospective study on 2.7 million adults identified 3.6% had one or more food allergies and intolerances, with seafood and fruits and vegetables being the most common trigger foods.23 Of the seafood, shellfish is more likely to cause new-onset IgE-mediated food allergy presenting in adult life, whereas allergy to fish is more likely to occur in childhood.24,25 Reported reactions to shellfish are most often to crustaceans rather than molluscs.26 It has been estimated that 60% of patients who have a crustacean allergy are sensitised to the pan allergen tropomyosin, but another allergen, sarcoplasmic calcium-binding

protein, has also been associated with clinical reactivity to prawns..27 Sensitisation may be to individual allergens, which may vary depending on the species of prawn, so it is recommended that diagnosis should be made using skin prick tests to the specific species of prawn involved in the reaction, using the fresh material.28,29 New-onset symptoms to tree nuts and occasionally to peanuts presenting in adult life are usually due to pollen antibodies recognising and reacting to cross-reacting proteins. This condition, known as pollen-food syndrome or oral allergy syndrome, affects 1-4% of UK adults, depending on geographical location.2 Testing with individual peanut and tree nut allergens is very useful in determining whether symptoms to nuts are due to PFS or a primary nut allergy. The key allergens provoking PFS are those which are homologous to the birch pollen allergen Bet v 1, and these include Ara h 8 (peanut) and Cor a 1 (hazelnut).30 Raw fruits and, to a lesser extent, vegetables, are also common causes of PFS, often provoking mild symptoms, although concentrated amounts of allergen, such as freshly made fruit juices, smoothies, or soy milk, which contains the birch cross-reacting allergen Gly m 4, can cause severe reactions.31,32 Severe or anaphylactic reactions to fruits and vegetables are more likely to occur due to lipid transfer proteins (LTP), especially the peach LTP allergen, Pru p 3. This condition was originally described only in South Mediterranean countries, but more recently has been recognised in some northern European countries.33,34 These allergens are found in both raw and cooked fruits, vegetables, nuts and cereals and are often linked to sensitisation to pollens such as plane tree and mugwort.35 Apart from peaches, tomatoes are also a common food trigger, but LTP allergens have been sequenced in many foods including lettuce and so-called ‘super foods’, such as goji berries and linseeds.36-39 WHEN IT IS NOT IGE-MEDIATED FOOD ALLERGY

Non-IgE-mediated food allergy does exist in adults.

Adult-onset eosinophilic oesophagitis presents with classic symptoms, such as dysphagia to solid food, reflux and food impaction, but also rings, strictures and narrowing of the oesophagus.40 Symptom management often includes highdose topical corticosteroids, but also elimination www.NHDmag.com August/September 2017 - Issue 127

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FOOD & DRINK diets. Both 6-food (milk, egg, wheat, seafood, peanuts/tree nuts and soy) and 4-food (milk, wheat, egg, soy) elimination have been found to improve symptoms, reduce eosinophilic infiltrate in oesophageal mucosa and improve endoscopic markers of inflammation.41 Although Food Protein Induced Enterocolitis Syndrome (FPIES) is considered to be a disease of childhood, shellfish is thought to cause a similar type of delayed non-IgE-mediated food allergy in adults.42 However, many adults presenting in the allergy clinic will report nonspecific reactions linked to foods, which are most frequently due to functional gut disorders, spontaneous urticaria/angio-oedema or, more rarely, intolerance to sulphites, benzoates, or naturally occurring vaso-active amines.43 Avoidance of gluten-containing foods dominates; one systematic review found selfreported wheat allergy was 3.6%, compared to food-challenge-defined wheat allergy which was 0.1%.44 In 2009, 3% of UK adults reported wheat to be a trigger food and more recently, 7.3% of Australian adults and 6.25% of adults in the Netherlands reported symptoms to wheat.45,46

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This is of concern, not least because Elli and colleagues have demonstrated that only 14% of those who suspect they are gluten intolerant are likely to be so.47 Also, gluten-free products have consistently lower levels of protein than their gluten-containing counterparts and gluten-free diets may be low in calcium, iron, zinc, folate and fibre, affecting not only nutritional status, but also the intestinal microbiota.48,49 CONCLUSION

Adult food allergy is increasing in prevalence. The key to diagnostic accuracy is to take a thorough history to determine the likelihood of an IgEmediated food allergy. Specific IgE tests should only be undertaken to suspected foods with oral food challenge performed should there be any mismatch between history and test results. Shellfish, fruits, and nuts are common triggers of IgE-mediated food allergy, but wheat is the food most often excluded by the patient, often leading to sub-optimal nutritional intakes. An excellent knowledge of food ingredients is essential when diagnosing and managing adult food allergy, making the dietitian an essential part of the allergy team.

PUBLIC HEALTH

VITAMIN AND MINERAL SUPPLEMENTS: ARE THEY NEEDED FOR CHILDREN? Priya Tew Freelance Dietitian and Specialist in Eating Disorders

Priya runs Dietitian UK, a freelance dietetic service that specialises in social media and media work, consultancy for food companies, eating disorder support, IBS and Chronic Fatigue. She works with NHS services, The Priory Hospital group and private clinics as well as providing Skype support to clients nationwide.

For full article references please email info@ networkhealth group.co.uk

Supplements are increasingly popular with adults and now in my practice I am seeing this trend in children too. So the question is, how much should we be promoting a food first approach and is there a need for supplements in children? Are parents aware of the potential need for supplements for children? Is there a tendency to rely on supplements to top up nutritionally rather than using a food first approach?

Ideally, of course, we would want all children to be achieving a balanced intake of nutrients from the food they eat: plenty of colourful fruit and vegetables, a spectrum of protein foods, a mix of grains and wholegrain carbohydrates, plus healthy fats and full fat dairy. The reality is that many families struggle to cook nutritious dinners and rely on quick convenience foods. This could be due to lack of time, lack of cooking skills, or general ease. Cooking for several children who all have different likes and dislikes, whilst they all also need your attention, can put a lot of pressure on parents.

Whilst some convenience foods can be absolutely fine to eat on a regular basis, many are often beige foods lacking in the range of nutrients the body needs. On top of this, children go through fussier stages where they can refuse to eat vegetables and limit themselves to a smaller range of bland foods, making it harder to achieve a balanced intake.1 This is a great area in which we, as dietitians, can give simple tips, healthy meal ideas and encourage variety in family meals. Reminding parents that just because a child says they don’t like a food on one day does not mean that they do not like it all of the time! From personal experience, I routinely have a child who refuses to eat a certain vegetable, but this changes throughout the year.

Offering foods in different forms and being inventive can be tiring for the meal preparer, but it also helps.

So, it would seem that although children can meet all their nutritional

needs through diet, there can be a role for supplements. A multivitamin/mineral with vitamin D in it, is a good option, rather than taking individual preparations of nutrients. Dietitians and nutritional professionals have the opportunity to educate parents and caregivers on the importance of a balanced diet, but also on how a supplement can be useful as a top up.

WHAT ARE THE RECOMMENDATIONS?

Vitamin D It is currently recommended that babies being breastfed are given a daily vitamin D supplement from birth, but, for some reason, this information does not seem to be filtering down. Having had three babies recently, I was not made aware of it in hospital, or by my midwife/health visitor, so I think that this is an area where we can improve on the health messages.

New mums are frantically adapting to having a baby to look after, so preparing them as much as possible before they give birth about supplements, weaning and feeding children is key.

Due to vitamin D only being present in a few foods and it not being sensible to have children out in the hot sun for too long, it is easy to see how they could become deficient. The Department of health recommends that breastfed babies 0-1 year are given a daily 8.510mcg vitamin D supplement.2 Formula milk is already fortified with vitamin D, so no extra supplement is required.

Children aged one to four years in the UK are recommended to take a

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NHD0817

®

Table 1: The recommended supplement amounts for vitamins A, C and D4 Vitamins D C A

0-1 year breastfed baby 8.5-10mcg 40mg

1-5 years 10mcg 15mg 200mcg

Table 2: Iron requirements in children and infants Age of child/infant 0-6 months 6-12 months 1-3 years

10mcg a day vitamin D supplement. However, it may be that this figure is too low. Some recent research in Sweden found that the amount of vitamin D needed varied on skin tone. Darker skinned children needed higher intakes of up to 28mcg/day of vitamin D in order to maintain sufficient plasma levels.3 In the summer months, if your child is outside without sunscreen for some of the day, they may be able to make all their vitamin D and not need a supplement. However, this can be hard to regulate and as vitamin D is not stored in the body, it is easier for most people to take a supplement all year round. There are of course foods that contain vitamin D (wild oily fish, free range meat, fortified breakfast cereals, egg yolks, some mushrooms, fortified margarine), but in reality, in the UK, it is not easy to achieve your vitamin D intake from these foods and sunlight.

Vitamins A and C From six months it is recommended that all babies take vitamins A and C as well. For breastfed babies that also means they need to continue with the vitamin D too. Then these same recommendations continue until the child is around five years of age.2 From this point, there are no set recommendations, but your child should be able to meet their micronutrient needs from a well-balanced diet.

Formula-fed babies do not need the vitamin drops until they are taking less than 500mls of formula milk a day. At this point (potentially at six months when weaning starts), it is recommended to take vitamin A, C and D. Good food sources of vitamin A include dairy foods, fortified margarines, carrots, sweet potatoes, swede, mangoes and dark green

Iron requirements 0.27mg/day 11mg/day 7mg/day

vegetables, so a focus on these foods will also help. Supplements should provide at least 200mcg/day (see Table 1).

Iron Iron stores are depleted from around six months of age. Due to the rapid growth that occurs, their risk of iron deficiency increases from six to 12 months. It remains a high risk from 12 to 24 months due to the toddler tending to eat less iron at this stage. It can be a fussier eating stage and toddlers start to exert taste preferences and opinions over what they eat. Iron deficiency at this stage can have an irreversible impact on cognitive and psychomotor development.5 Although iron is known to be a mineral that young children may be deficient in, they should be able to meet their needs through diet. There is also a risk of death by poisoning in this age group.6 So, more of a focus needs to be made on iron rich foods rather than taking large amounts of supplements. A caution with vitamin and mineral supplements in general needs to be taken, as they are attractive and often tasty to children. Keeping them out of reach so that overdosing doesn’t occur is important; this message is a good one to pass onto parents.

TYPES OF VITAMINS AVAILABLE

The health visitor may be able to direct mums to free Healthy Start vitamins. These are often available through Sure Start centres if mums are in receipt of benefits. The same healthy start vitamins can also be bought at some pharmacies, supermarkets and at Superdrug.

Other alternatives include Abidec and Dalivit.

Pharmacies may also sell their own brands; it is a good idea to check the dosage of these. www.NHDmag.com August/September 2017 - Issue 127

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CONDITIONS & DISORDERS

THE ‘TIRED ALL THE TIME’ GENERATION: ALTERNATIVE WAYS TO RE-ENERGISE Dr Emma Derbyshire Independent Consultant Emma heads Nutritional Insight Ltd, an independent consultancy to industry, government and communication channels. An avid writer for academic journals and media, her specialist areas are maternal nutrition, child nutrition and functional foods. www.nutritionalinsight.co.uk @DrDerbyshire

For full article references please email info@ networkhealth group.co.uk

Acknowledgement This article was supported by Red Kooga Ginseng. The article was written independently and its content reflects the opinion of the author only.

22

Relentless tiredness is one of the most common complaints reported in GP surgeries today.1 There are many drivers behind feelings of incessant tiredness with this ultimately impacting on family, work and social lives. Unfortunately, in the battle to combat fatigue, there is a tendency to turn to sugary products, caffeine or energy drinks for a ‘lift’ which may even exacerbate the problem.

This article discusses alternative approaches to regaining energy.

Tiredness (or fatigue) tends to be described as a lack of or reduced energy and physical or mental exhaustion.2 In fact, amongst medics and health professionals, the problem of feeling exhausted is so common that it now has its own acronym ‘TATT’ which refers to feeling ‘Tired All The Time’.1 Survey data from the Royal College of Psychiatrists has shown that at any given time, one in five people feel ‘unusually tired’, while one in 10 people have ‘prolonged fatigue’.3 In general, there is a tendency for women to feel more fatigued than men.3 Fatigue also appears to be less common in the very young and old.3 A range of factors can affect the likelihood of feeling tired, including physical, psychological and lifestyle habits (see Table 1).3 It should, however, be recognised that in cases where tiredness persists for longer than four months, or accompanies unintentional weight loss (5% body weight in six to 12 months), immediate medical advice should be sought.1 ERRONEOUS APPROACHES

Unfortunately, when looking to combat tiredness, there is a general tendency to turn to sugary products, caffeine or energy drinks. For example, amongst night shift workers, such as nurses, one case reported, “feeling exhausted as the end of your night shift approaches…the quick energy boost offered by a fizzy drink or bar of chocolate is tempting”.4 Equally, evidence from the latest National Diet and Nutrition Survey5

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shows that mean intakes of non-milk extrinsic sugars (NMES) - now termed ‘free sugars’ - exceed the recommendation of no more than 11% of food energy for all UK adults. Some of the main sources of NMES in UK adults are confectionery, soft drinks and fruit juice, cakes and biscuits.

The energy drinks market has also expanded extensively, with many of these drinks containing caffeine, B vitamins, sugars, inositol and taurine with a view to counteracting fatigue.6 These drinks appear to be very popular, with one study reporting that 78.1% of student nurses use these to help with fatigue and 27.8% report experiencing palpitations.7 The authors of this work concluded that even student nurses need to be educated about how to prevent and reduce fatigue safely.

GETTING BACK GET UP AND GO

There are a number of strategies that may help to get to the bottom of TATT and improve energy levels. Several of these are discussed below.

B vitamins B vitamins have an important role in energy metabolism. Based on this, the European Food Safety Authority has authorised the claims that vitamin B6 and B12 contribute to the reduction of tiredness and fatigue.8 B12 screening may be worthwhile in older patients who report problems of tiredness, given the fact that malabsorption problems and pernicious anaemia are common with advancing age.9

Table 1: Possible reasons for tiredness3 Physical Being under/overweight Physical illness Pregnancy/having a young baby Poor sleep Doing too much physically/mentally Psychological Worrying and stress Insomnia Expecting too much of yourself Lifestyle habits Rollercoaster activities Night/shift work Work stress, e.g. long commutes Excessive caffeine/alcohol Dehydration

Caffeine check If caffeine is ingested in the evening, at night or before naps, it may disrupt sleep.10 This in turn can possibly phase-delay circadian rhythms, so contributing to sleep loss and subsequent decreases in alertness.11 Check iron status It may be worth checking iron status if feeling TATT. Presently, almost half (48%) of young British women have iron intakes below the Lower Reference Nutrient Intake (LRNI) along with a quarter (27%) of women aged 19 to 64 years.12 It is well recognised that iron can contribute to fatigue.13 Drinking enough water?

In one study comprised of healthy males, dehydration increased fatigue along with feeling of tension and anxiety.14 Ideally, adult males should be aiming for 2.5 litres of water and females 2.0 litres of water daily - from fluid and food sources.15 Improve your sleep There is sleep and there is good quality sleep.

Having a hot bath before bed, doing something relaxing before bed and avoiding eating late at night3 may help in trying to reduce fatigue and improve sleep.

GINSENG AND FATIGUE

There is growing evidence that ginseng could have a role to play in counteracting fatigue. Ginseng (Panax) is an herbaceous plant which contains signature phytochemicals (Saponin ginsenosides) that are regarded as having anti-fatigue effects.16 Recently, murine research has found that ginseng oligopeptides may also contribute to its antifatigue effects.17 In terms of clinical evidence, amongst females with multiple sclerosis, 0.25g ginseng taken twice daily over three months has been found to relieve fatigue and improve quality of life.18 Equally, research conducted on patients with cancer-related fatigue found that Panax ginseng at doses of 0.8g and taken over 29 days improved fatigue as well as sleep.19 Amongst patients with chronic fatigue syndrome, 1g or 2g of Panax ginseng taken daily over four weeks reduced fatigue severity scores, although this did not reach statistical significance.20 Other research has found that a daily dose of 0.4g of Panax ginseng taken over eight days improved calmness amongst a sample of healthy adults asked to undertake mental arithmetic tasks.21 Another study using red ginseng found associations with reduced cortisol levels, typically increased by stress, indicating that this may alleviate psychological rather than physical fatigue.22 Alongside this, there is some evidence that ginsenosides may have a role to play in the treatment of influenza viruses. It is thought that these powerful compounds may be able to attach to viral proteins, rendering them less active.23 Clearly, more human trials are needed, along with theories about how ginseng may exert its antifatigue actions. That said, there does appear to be some interesting evidence emerging in relation to the anti-fatigue effects of ginseng, particularly in at-risk populations.

SUMMARY

Taken together, feelings of incessant tiredness appear to be a common part of modern life. Work pressures, family life and lifestyle habits can all take their toll. Unfortunately, the easy and often readily available solutions, such as sugary products, caffeine or energy drinks, are not necessarily the most effective. Reflecting on daily eating habits, routines and natural approaches could be a more appropriate way forward. www.NHDmag.com August/September 2017 - Issue 127

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7 Red Flag Indicators for when to use an AAF 1. INFANTS SYMPTOMATIC ON AN eHF1-3 2. SEVERE GI SYMPTOMS1-4 3. FALTERING GROWTH2,3,5 4. MULTIPLE FOOD ALLERGIES1,5 5. SEVERE ECZEMA1-3,5 6. INFANTS SYMPTOMATIC ON BREAST MILK1-3,5 7. ANAPHYLAXIS3,4

Just 14 days

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Trust Neocate LCP

to provide fast and effective resolution of Cow’s Milk Allergy symptoms

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Neocate: The UK’s No. 1 Amino Acid-Based Formula References: 1. Koletzko S, Niggemann B, Arato A, et al. J Pediatr Gastroenterol Nutr 2012; 55(2):221-229. 2. Venter C, Brown T, Shah N, et al. Clinical and Translational Allergy 2013; 3(1):23. 3. Ludman S, Shah N, Fox A. BMJ 2013; 347-355. 4. Fiocchi A, Brozek J, Schünemann H, et al. WAO J 2010; 3:57-161. 5. Hill DJ, Murch SH, Rafferty K et al. Clin Exp Allergy 2007; 37(6):808-822. 6. De Boissieu D, Matarazzo P, Dupont C. J Pediatr 1997; 131(5):744-747. 7. Vanderhoof JA, Murray MD, Kaufman S et al. J Pediatr 1997; 131 (5):741-744.

Neocate is a Food for Special Medical Purposes for use under medical supervision, after consideration of all feeding options including breastfeeding. eHF=Extensively Hydrolysed Formula; AAF=Amino Acid-Based Formula; GI= Gastro Intestinal

For more information visit www.neocate.co.uk

PAEDIATRIC

COWS’ MILK PROTEIN ALLERGY IN INFANTS Maeve Hanan Registered Dietitian, City Hospitals Sunderland

Maeve works as a Paediatric Dietitian in City Hospitals Sunderland. She also runs a blog called Dietetically Speaking.com which promotes evidencebased nutrition and dispels misleading nutrition claims and fad diets.

Allergy has been called ‘the number one environmental epidemic disease facing children of the developed world’.1,2 Cows’ milk protein allergy (CMPA) is the most common food allergy found in children; with a worldwide prevalence of 1.9-4.9%3 and a UK prevalence of 2-3%.2,4 As milk is a key part of an infant’s diet, the nutritional management of this condition is crucial.

CMPA is a reproducible adverse immune response to one or more of the proteins found in cows’ milk, which usually presents before the age of one and is often outgrown by the age of five.4 The risk of CMPA increases when an infant has a history, or family history, of atopy; for example, eczema or asthma in the infant, or a family history of eczema, For full article asthma, hay fever or food allergies.5 references please email There is evidence that breastfed info@ infants have a lower prevalence of CMPA, networkhealth with about 7% of formula or mixed-fed group.co.uk infants developing CMPA compared to about 0.5% of exclusively breastfed This article infants. Furthermore, breastfed infants has been Peer are reported to have less severe reactions Reviewed by if they do develop CMPA.3,6 The primary factor involved in the development Dr Rosan Meyer, of food allergy in infancy is genetic, Paediatric Research Dietitian, with a parental atopic history (asthma, Honorary Senior eczema and hayfever) significantly Lecturer, Imperial increasing the risk.8 Research has also identified contributing environmental College, London factors, which include smoking during and Chair of the BDA Food Allergy pregnancy, the infant’s gut microbiome and Intolerance which may be affected by route of birth Specialist Group.

(C-section versus vaginal birth), early antibiotic use and dietary diversity.8,20,21 CMPA is classified as either immunoglobulin E- (IgE) or non-IgEmediated, depending on the type of immune response which occurs. IgEmediated reactions occur when IgE

antibodies form in response to cows’ milk protein, which causes the release of histamine from basophils and mast cells; whereas it is thought that non-IgEmediated CMPA is caused by T-cells.5 IgE-mediated reactions have a quick onset, usually presenting within minutes to two hours and the symptoms can be severe, such as anaphylaxis, hives and facial swelling.5,9 Non-IgEmediated reactions are more common, often have a more delayed onset (such as two hours to three days) and usually present with less acute symptoms, such as gastrointestinal and skin symptoms.

See Table 1 (p28) for a full comparison of symptoms.5,9 Non-IgE-mediated CMPA tends to resolve by the age of three, whereas IgE-mediated CMPA more commonly resolves by the age of five.10 DIAGNOSIS

An allergy focused clinical history and physical examination based on the NICE guidelines for diagnosing food allergy in the under 19s is a crucial part of establishing whether CMPA is present, this usually includes gathering information on the following:11,7

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REFERENCES: 1. Sampson HA et al. J Pediatr 1991;118(4):520-525. 2. Data on file.

Abbott Laboratories Ltd., 2013 (Similac Alimentum case studies). 3. Borschel MW and Baggs GE. T O Nutr J 2015;9:1-4. 4. Koo WWK et al. J Am Coll Nutr 2006;25(2):117-122.

IMPORTANT NOTICE: Breastfeeding is best for babies, and is recommended for as long as possible during infancy. Similac Alimentum is a Food for Special Medical Purposes and should be used under the supervision of a healthcare professional.

Date of preparation: July 2015 RXANI150117

THIS IS HUGE After months of coping with the sleepless worry and heartbreaking cries of her cow’s milk allergy, suddenly, a little moment like this doesn’t seem so little after all.

• Proven efficacy – hypoallergenic and has been shown to relieve symptoms1,2 • Proven to be well tolerated – 96% of infants tolerated Similac Alimentum3 • Palm oil and palm olein oil free – supports calcium absorption and bone mineralisation4 SIMILAC ALIMENTUM. FOR BIG LITTLE MOMENTS.

PAEDIATRIC Table 1: Symptoms of IgE- and non-IgE-mediated CMPA based on the Milk Allergy in Primary Care (MAP) guidelines9 IgE-mediated

Non-IgE-mediated

Respiratory and/or cardiovascular signs of anaphylaxis

No sign of anaphylaxis

Skin: Acute pruritus (itching), erythema (rash), urticaria (hives), angioedema (swelling), flaring of atopic eczema

Skin: pruritus (itching), erythema (rash), significant atopic eczema

Gastrointestinal: Vomiting, diarrhoea, abdominal pain/colic

Gastrointestinal: Vomiting, reflux, food refusal or aversion, abdominal discomfort, loose or frequent stools, perianal redness, constipation, uncomfortable stools, blood and/or mucus in stools in an otherwise well infant, faltering growth

Respiratory: Acute rhinitis (inflammation of the nasal passage nasal itching, sneezing, runny nose, congestion), conjunctivitis

Respiratory: Catarrhal airway symptoms (build-up of mucous in the back of the nose, sinus’ or throat) - usually in combination with one or more of the above symptoms

• the suspected allergen (e.g. cows’ milk); • the history of presenting symptoms (see Table 1) including: age of onset, speed of onset, duration of symptoms, severity of reactions, frequency of reactions, how many organs produced a reaction, locations the reaction has occurred, reproducibility of symptoms, how much of the food causes a reaction; • medication and response to previous treatments; • personal history of atopy (eczema, hay fever, dust allergies, asthma); • family history of atopy; • dietary intake, including cultural factors which affect food choice; • history of infant feeding and weaning if applicable; • history of response to the elimination and reintroduction of foods; • growth and nutritional status.

As well as this allergy-focused history, there are validated tests which can be used to test a suspected IgE-mediated CMPA, such as: skin prick tests to check for IgE antibodies in the skin and specific IgE serum assays to test for circulating IgE antibodies.4,9,11 Oral food challenges are the gold standard to confirm diagnosis, especially if there is any uncertainty 28

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about this. For IgE-mediated reactions, these take place under medical supervision and can be open or blinded.4 Non-IgE-mediated CMPA can be more difficult to diagnose as there are no validated tests to use, therefore diagnosis is based on a combination of an allergy-focused history and a trial elimination diet and ideally a subsequent reintroduction phase to monitor whether symptoms return.11 It is important to note that there are types of complementary and alternative medicines which offer testing for CMPA, such as kinesiology and hair testing, but as these are not medically approved, they have no place in diagnosis of CMPA.11,22 CMPA can be mistakenly diagnosed as lactose intolerance due to an overlap of symptoms (diarrhoea, abdominal pains, cramps, bloating, flatulence and nausea); however, lactose intolerance is a deficiency of the enzyme lactase rather than an allergy to the protein in cows’ milk, therefore a thorough allergy focused history can avoid misdiagnosis.12,23 Some patients may have secondary lactose intolerance as a result of damage to the gut lining when CMPA is untreated; however, this is usually a transient condition as long as a strict cows’ milk protein(CMP) free diet is adhered to.12-13

Table 2: CMP-free infant formulas* (List of formulas valid at the time of publishing this table)

Extensively hydrolysed formula (EHF) e.g. Althera, Nutramigen 1 & 2, Aptamil Pepti 1 & 2, Cow & Gate Pepti Junior, Similac Alimentum, Pregestimil

EHF is the first-line treatment used for mild to moderate CMPA and is tolerated by >90% of those with CMPA. The CMP is broken down using heat and enzymatic treatment into short peptides and tested to be tolerated by 90% of children with a proven CMPA.22,24 Some EHF also contain probiotics, medium-chain triglyceride (MCT) fat and lactose; the exclusion of lactose in CMP-free formulas is no longer advised routinely as lactose is important to aid calcium absorption, promote healthy gut bacteria and may improve palatability of the formula.4,15 The choice of formula depends on the child’s diagnosis and local CCG preference.

Amino-acid formula (AAF) e.g. Neocate LCP, Nutramigen PURAMINO, Alfamino

AAF is totally cows’ milk free and based on amino acids.

Although >90% of infants with CMPA tolerate EHF,9,17,18 there are specific indications for AAF, such as:4,9 • when symptoms persist on an EHF; • anaphylaxis; • severe non-IgE mediated CMPA, e.g.eosinophilic oesophagitis; • severe eczema not improving on standard treatment; • faltering growth ; • multiple food allergies; • severe ongoing symptoms in exclusively breastfed in spite of a maternal elimination diet.

Soya-based formula e.g. Wysoy

Soya-based formulas are only suitable for infants over six months. These are more readily available to buy over the counter and may be more palatable for some infants. It is important to trial soya products with caution as between 2-14% of children with IgEmediated allergy and up to 50% of non-IgE-mediated allergy may react to soya as well when they have CMPA.4,19,25

At the time of writing this article, the updated version of the Milk Allergy in Primary Care (MAP) guideline had not been released; this is called the international Milk Allergy in Primary Care (iMAP) guideline (due to be published on 16th August 2017), as it has been designed to suit an international audience. An updated iMAP six-step milk ladder is also due to be released.

ELIMINATING COWS’ MILK PROTEIN

CMP should be completely eliminated from the diet for two to six weeks to see whether the presenting symptoms improve.4,9,11 The NICE guidelines on food allergies in under 19-year-olds highlight that dietetic input is important in order to support with ‘nutritional adequacies, timings of elimination and reintroduction, and follow-up’.11

Breastfeeding mothers are encouraged to continue to breastfeed. but to exclude cows’ milk from their diet, they also need to be assessed as to whether a daily calcium and vitamin D supplement is indicated, bearing in mind that a breastfeeding mother requires 1,250mg of calcium and 10mcg of vitamin D per day.4,9,14 Formula-fed infants need to switch to a hypoallergenic formula24 (see Table 2).

It is important to educate breastfeeding mothers, parents and carers of infants of weaning age and older children about interpreting food labels, which foods and ingredients contain cows’ milk protein (see Table 3). It is important to offer alternative food and drinks to ensure a balanced diet, especially in terms of calcium intake, and the duration, www.NHDmag.com August/September 2017 - Issue 127

29

PAEDIATRIC Table 3: Food items and ingredients that contain cows’ milk protein4

Butter, butter fat, butter milk, butter oil, casein (curds), caseinates, hydrolysed casein, calcium caseinate, sodium caseinate, cheese, cheese powder, cottage cheese, cows’ milk (fresh, condensed, dried, evaporated, powdered, ordinary infant formulas, UHT, low fat), cream, artificial cream, sour cream, ghee, ice cream, lactalbumin, lactoglobulin, malted milk, some margarines, milk protein, milk powder, skimmed milk powder, milk solids, non-fat dairy solids, non-fat milk solids, milk sugar, whey, hydrolysed whey, whey powder, whey syrup sweetener, yoghurt, fromage frais, lactose

safety and limitations of an elimination diet. It is also crucial to highlight that shop-bought CMPfree milks should be fortified with calcium, vitamin D and B vitamins. Unsweetened CMPfree milks are useful for weaning; however, if there is a concern with faltering growth, then a version with a higher calorie content may be a better choice. Higher calorie dairy-free milks also have an overall nutritional profile which is more similar to full fat cows’ milk and so may be a more suitable choice as a main milk drink from one to two years of age if CMP exclusion is still indicated.

Additional high energy high protein dairyfree options in the treatment of faltering growth include: oils, nut butters and dairy free spreads, creams, cheeses, ice creams and puddings. Further nutritional considerations often include general weaning support, minimising reflux, advice on avoiding other allergens where multiple food intolerances occur and aiming to avoid unnecessarily restrictive eating. Information and fact sheets on alternative dairy options can be obtained from the British Dietetic Association (BDA) website: www.bda.uk.com/ As CMPA resolves in the majority of cases, it is important that regular reviews need to take place with a healthcare professional to ensure that the child is developing tolerance to CMPA.4,9 For those with an IgE-mediated CMPA and Food Protein Enterocolitis Syndrome, a ward-based food challenge is needed to test whether tolerance to CMP has developed.4,9 This involves close medical supervision while introducing incremental dosages of cows’ milk.4 30

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However, for mild to moderate non-IgEmediated CMPA, advice can be given on the gradual reintroduction of cows’ milk using a milk ladder approach; this involves introducing small amounts of products containing well-cooked milk to begin with, as heat treatment alters the protein structure of CMP and reduces allergenicity, and eventually introducing fresh milk if tolerated.9 It is important that parents are advised to continue to include tolerated milk products in their child’s diet and when a step hasn’t been tolerated, to revert to the previous step on the ladder and continue including all foods up to this level, then periodically trying the next step to see if tolerance has been acquired.9 It is best to try reintroductions early in the day to avoid a reaction going unnoticed overnight and the amount of time needed on each step of the milk ladder varies; the MAP milk ladder highlights that this may be one day or one week depending on the individual.9 A milk ladder approach can also be used when a breastfeeding mother is reintroducing CMP into her diet to test for tolerance in her child. From clinical practice, it may be easier to start reintroductions via one route initially rather than introducing CMP to the mother’s diet and the infant’s diet at the same time.

CONCLUSION

As CMPA is a nutritionally complex condition, dietitians are central to the management of this, with our involvement spanning from diagnosis through to tolerance development in most cases.

Therefore, it is important that we are aware of the full scope of CMPA, so that we can provide the best possible support for the families that we work with.

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For further information contact our Healthcare Professional Helpline on 0800 996 1234 or visit www.eln.nutricia.co.uk/cma References: 1. Verwimp JJ et al. Eur J Clin Nutr. 1995;49 (Suppl1):S39-S48. 2. Giampietro PG et al. Pediatr Allergy Immunol. 2001;12:83-86. 3. Arslanoglu S et al. J Biol Regul Homeost Agents.

2012;26:49-59. 4. Campden BRI conducted a blind taste test using a home usage design with a sample of 100 Dieticians and General Practitioners from 16.11.2016 to 09.12.16. Participants rank ordered the extensively hydrolysed formula (EHF) milk samples (Danone Aptamil Pepti, Abbott Similac Alimentum, Nestle SMA Althera and Mead Johnson Nutramigen LGG) in term of overall liking and answered a series of attitudinal questions in relation to the impact of EHF’s palatability on infants with CMA and their families. The results from the ranking showed that the Danone Aptamil Pepti sample was liked signifi cantly more than all the other three samples tested. * A home usage test assessment was carried out between 16/11/16 and 9/12/16 on the 4 products indicated for cows’ milk allergy from birth and included 100 UK healthcare professionals.

IMPORTANT NOTICE: Aptamil Pepti 1 & 2 are foods for special medical purposes for the dietary management of cows’ milk allergy. They should only be used under medical supervision, after full consideration of the feeding options available including breastfeeding. Aptamil Pepti 1 is suitable for use as the sole source of nutrition for infants from birth, and/or as part of a balanced diet from 6-12 months. Aptamil Pepti 2 is suitable for babies over 6 months as part of a mixed diet.

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IMD WATCH

In association with the NSPKU

LOW PROTEIN DIETS IN METABOLIC DISORDERS: AN OVERVIEW Suzanne Ford NSPKU Dietitian for Adults Suzanne Ford works as a Metabolic Dietitian for Adults at North Bristol NHS Trust.

She has been a Dietitian for 21 years, with six of them working in Metabolic Disease.

For full article references please email info@ networkhealth group.co.uk

In this article, I will cover the principles of low protein diets, the nutritional and practical challenges posed and how metabolic dietitians and patients are collaborating to seek and share knowledge of good practice and develop the evidence base.

In Metabolic Dietetics (and in healthcare in general) we can all expect to see more patients in the future with disorders needing low protein diets. In 2015, the newborn screening panel was expanded to include four additional metabolic disorders; so, the improved diagnosis and management will see higher numbers of patients surviving into adulthood.

Low protein diets are a key feature of Metabolic Dietetics and there are two broad types: one is the safe protein diet which may be used in urea cycle disorders, organic academics etc, and the second is the exchange based diet for phenylketonuria, tyrosinaemia, homocysteinuria and isovaleric acidaemia. This requires commitment from the patients or families and knowledge, skill and clinical judgement from dietitians. In both these groups of diets, the evidence base and food analysis knowledge is incomplete and evolving.

The aims of a low protein diet are to: • minimise the production of toxic metabolites; • supply all amino acids for any growth and development; • supply amino acids for basic tissue turnover; • minimise the release of any endogenous toxic metabolites caused by catabolism.

SAFE PROTEIN DIET

WHO/FAO/UN 2007 Safe protein levels are given in age and gender

Table 1: WHO/FAO/UN 2007 Safe Protein levels Age

Intake g/kg bw /day

16y

0.84

17y

0.83

18y

0.82

>18y

0.83

specific grams per kilo of body weight.

(Pregnancy and lactation have been omitted, as I will not cover those in this piece.)

The amount of natural protein tolerated by patients with different disorders will vary dependent on the disorder itself and the individual's phenotype, i.e. the expression of the genetic mutation they have. In many cases, protein allowances are titrated up from infancy through childhood to adulthood, using a combination of prediction equations and biochemical monitoring in conjunction with nutritional intake analysis.

Practices throughout UK metabolic centres and also European centres have been surveyed and published in the last five years and consensus clinical guidelines are under development, or have been published for metabolic disorders such as homocystinuria. The practices surveyed for low protein diet prescriptions focused on both the gram per kilo protein prescribed or used and also the use of essential amino acids (EAA). EAA are used to achieve normal growth and metabolic stability (if a particular amino acid

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33

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PKU (Phenylketonuria). GMP (Glycomacropeptide). PE (protein equivalent). Phe (Phenylalanine).

1 Data on file. *Lowest per 20g PE. #Minimum 6 months in children aged between 6 and 16 years. PKU sphere™ is a food for special medical purposes and must be used under medical supervision. For the dietary management of PKU.

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CONDITIONS & DISORDERS Table 2: Table of Exchanges: amount of food providing one exchange or 1g of protein - a small sample Food

Tyr

Phe

Leu

Food

Tyr

Phe

Leu

Cows' milk

30ml

30ml

15ml

Jacket or boiled potatoes

50g

80g

60g

Single cream

30ml

40ml

20ml

Roast potatoes

35g

55g

45g

Double cream

60ml

60ml

35ml

Chips

25g

45g

35g

is rate limiting then muscle protein may be catabolism to release that amino acid, which could raise levels of the toxic metabolites).

Prescription of amino acids is a difficult clinical decision to make, as it is likely to push up the overall nitrogen intake and risk pressure on the defective metabolic pathway, e.g. giving EAA in urea cycle disorders could raise ammonia levels - hyperammonaemia causes encephalopathy due to astrocyte (neurons) swelling.

If EAA are given, ideally they would make up 20-30% of the total nitrogen requirement and would be taken in divided doses spread through the day for optimal assimilation. In the UK and Europe the safe protein intakes prescribed to patients ranged from 0.4g/ kg/d to 1.2g/kg/day and those surveyed said that they would base the prescription on metabolic stability (i.e. Number of recent decompensations), ammonia levels and qualitative amino acids in the blood (QAA).

The natural protein choices in the diet should include sources of high biological value protein - this is challenging, as these are potentially concentrated sources of protein, i.e. portion sizes need careful judgement – however, this will give a better supply of all EAA than cereal protein for example.

More work is needed for these types of diet, focusing in particular on adult patients who experience pregnancy and lactation and start to acquire comorbidities such as diabetes, hypertension, overweight and gallbladder disease.

EXCHANGE BASED LOW PROTEIN DIETS

For more restrictive low protein diets, an exchange system may be used to teach patients how to constantly assess their own protein intake through the day and make food choices to fit a very precise protein prescription,

e.g. some adult patients with classical phenylketonuria may be on three exchanges per day, whereby an exchange equals 50mg phenylalanine or 1g protein. Thus, there is an exchange system for phenylalanine and also for tyrosine, leucine, methionine and lysine. Not all exchange systems are the same; for instance, the leucine system is for 100mg leucine. The foods which have been analysed for their amino acid content are usually analysed for all five of these amino acids and show that milk and creams have different acid contents, as do vegetables, etc. See Table 2 for a comparison of a small range of foods in the phe, tyr and leu exchange systems.

Precision is needed - just being low protein and choosing low protein foods might not achieve metabolic control as having both too little or too many exchanges in a day can cause symptoms. Exchanges per day for adults typically range from six to 20 with some patients who have mild variants of the disorder having 20, 30 or maybe even 40 exchanges (quite unusual).

The following are the different elements of a highly restricted, exchange system diet: • Exchange free foods (i.e. foods which can be eaten without counting for protein content).

• Exchange Foods (those to count or weigh to provide small amounts of natural protein).

• Foods to avoid (usually high protein foods such as meat, fish, eggs or cheese, also nuts and seeds). Some high protein foods might sometimes be used as exchange foods.

• Low protein prescribable foods such as low protein bread, pasta, biscuits, crackers, cakes, milk substitute and flour mixes, or baking aids such as an egg replacer.

• Protein substitute - commonly amino acids, there is a newly available glycomacropeptide.1 www.NHDmag.com August/September 2017 - Issue 127

35

CONDITIONS & DISORDERS Annual nutritional monitoring must include the following:3 • Three-day food diary demonstrating: - protein substitute use - the dose and timing, or Essential Amino Acids - use of any separate micronutrients - use of low protein prescribable foods - use of Emergency Regime including time off protein containing foods •

Bloods taken in (minimum) annual clinic: - Full blood count - Urea and electrolytes, liver function tests, bone profile - Serum B12, ferritin and folate - Serum vitamin D - Homocysteine - Methylmalonic acid - Qualitative amino acids - Sometimes zinc, selenium - Thyroid function tests if indicated and parathyroid hormone - Ammonia and glutamine in urea cycle disorders (ammonia must be put on ice)

•

Checking with patients if they attend GPs for intramuscular B12 injections.

•

Anthropometry: weight, height and BMI need to be measured and recorded.

•

For adults with bloodspots: monthly.

MONITORING FOR NUTRITIONAL AND CLINICAL EFFECTIVENESS ON A LOW PROTEIN DIET

Monitoring is vital - we know that adults on low protein diets may have insufficient micronutrients and perhaps protein, due to dwindling compliance with protein substitute in adolescence and early adulthood - yet they still restrict their natural protein intake,2 leading to protein deficiency and anaemias and various clinical and functional sequelae.

LOW PROTEIN PRESCRIBABLE FOODS

These foods may comprise up to 50% of the Kcal intake of someone on a highly restricted protein diet and thus a large number of prescriptions each month may be required.

The NSPKU have guidelines on the amounts - see www.nspku.org for further information.

A survey of Scottish patients’ experiences of prescribable foods4 shows that patients appreciated these products: 97% said that they were important for management of the PKU diet; 89% said that the prescribable foods 36

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were important for phenylalanine control, satisfying appetite and improving diet variety.

The sensory properties of these foods are well perceived by patients; however, if a product is discontinued, it is difficult for patients to easily find a similar prescribable alternative.

Thus, product discontinuation can prove quite challenging for patients and families.

Another challenge widely experienced is accessing prescribable foods easily and in a timely manner. Half of those surveyed by Cochrane et al4 had experienced comments on their prescription and 60% of the comments were negative. As the gluten-free food prescription system is out to consultation

by NHS England, the author imagines this situation could worsen. Home deliveries have alleviated some of these issues, where home delivery is possible; however, some GPs even decline to allow home delivery and monthly scripts, for fear of companies overstocking patients’ homes with their products.

The challenges anecdotally relayed are that community healthcare professionals perceive that these products are similar to glutenfree products and could be purchased easily in a supermarket. Other perceptions which are expressed are that whole families are consuming the prescribed foods, or that cakes and biscuits are luxury items which must not be paid for as part of NHS service.

NEW FOODS IN SUPERMARKETS

NSPKU have funds which are used for amino acid analysis and the constantly evolving food industry means that new foods are always needing analysis. A good example of this are the hybrid vegetables such as kalettes which are a hybrid of kale and Brussels sprouts, both of which have some phenylalanine content which must be counted in the diet for people with PKU. A recent rise in the use and availability of coconut products in milk substitutes, yoghurts, puddings, ice creams etc has helped increase the variety of foods which are exchange free or very low in exchanges.

SOURCES OF SUPPORT AND INFORMATION

We know from surveys that a low protein diet (with exchanges) takes carers of young children,

on average, 19 hours per week to administer,5 and can surmise that adults independently self-administering a low protein diet must make a significant time investment (although this is currently unstudied). Support and information are both needed on an ongoing basis to enable compliance on a low protein diet – and possibly this cannot just be provided by the health service.

As well as dietitians as a source of information, metabolic centres may give companies who manufacture and distribute low protein foods many opportunities to meet patients and give product advice and ideas.

Most Metabolic dietitians host companysponsored social events as part of their recognised workload. This can enhance patient experience and engagement. Furthermore, ongoing peer support and knowledge exchange is a vital aspect of living on a low protein diet; social media does enable this (although not all messages are positive, nor is all information accurate).

To summarise: we will see increasing numbers of patients on low protein diet accessing healthcare in the future, and the challenges are for Metabolic dietitians and their industry collaborators as well as patient bodies themselves, to support dietary compliance on low protein diets.

Support and information are both needed on an ongoing basis to enable compliance on a low protein diet – and possibly this cannot just be provided by the health service.

Coming in the next issue October 2017 DIGITAL-ONLY - View it online at NETWORK HEALTH DIGEST

• Cows’ milk allergy

www.NHDmag.com

• Dysphagia texture modification • Malabsorption

• Weight management in sport

• Non-alchoholic Fatty Liver Disease

www.NHDmag.com August/September 2017 - Issue 127

37

IMD WATCH: GALACTOSAEMIA

NEW GALACTOSAEMIA GUIDELINES: WHAT DO THEY MEAN FOR DIETITIANS? Pat Portnoi Dietitian to the Galactosaemia Support Group (GSG) Pat has worked for the GSG for 19 years. For many years, Pat and Anita have undertaken research on cheese in galactosaemia and have recently been involved in developing the new international guidelines on galactosaemia.

Anita MacDonald Consultant Dietitian in Inherited Metabolic Disorders, Birmingham Children’s Hospital Anita has had 38 years of clinical experience in Paediatric Dietetics, particularly Inherited Metabolic Disorders.

She is a highly respected researcher, writer and teacher in IMD Dietetics. Anita is particularly interested in galactosaemia and PKU.

38

Galactosaemia is an inherited inborn error of carbohydrate metabolism, affecting one in 44,000 people in the UK. It is more common in the Irish and traveller populations. Although specialist dietitians in metabolic centres are in the best position to take care of their dietary needs, many patients with galactosaemia receive their routine care at district general hospitals.

Galactosaemia is caused by a profound deficiency of galactose-1-phosphateuridyltransferase, which leads to the accumulation of various metabolites.

Fundamentally, it is managed by a lifelong, very low lactose/galactose diet.

Although the disorder has been treated for 60 years, patient outcome is variable, but with many having cognitive, executive and neurological dysfunction.

There is no apparent relationship between severity of dietary restriction and patient outcome.1 The actual cause of long-term clinical problems is not established.

In 1999, the UK Galactosaemia Steering Group published national guidelines for the UK, but there was no formal assessment of the evidence.2 No other guidelines had been published at that time.

In 2012, a review of current practice of management showed that treatment practice varied widely.1 A dietetic review of the severity of galactose restriction in adults in Europe, Australia and New Zealand3 also indicated diverse clinical practice.

HOW THE GALACTOSAEMIA GUIDELINES WERE DEVELOPED

To provide patients around the world with the same state-of-the-art care, evidence-based guidelines were developed by the Galactosaemia Network (GalNet), and 23 international experts in their own fields from Europe and the USA working together. Ten different fields of interest in classical galactosaemia were identified:

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1) Diagnostics 2) Biochemical follow-up 3) Dietary management 4) Cognitive development 5) Speech and language development 6) Neurological complications 7) Psychosocial development and mental health 8) Endocrinology and fertility 9) Bone health 10) Ophthalmological complications Key questions were suggested for each area of interest.

Formalised literature searches were undertaken for each key question and selected published studies were evaluated by each subgroup.

Consensus was reached within each group and recommendations developed accordingly. The body of evidence for each recommendation was ‘low to very low’ because of the rarity of the disorder and difficulties in performing randomised controlled trials when patient numbers are limited.

Accordingly, each recommendation was assigned a strength of recommendation.

Only if highly consistent results were found across multiple studies was it considered strong (++). Discretionary recommendation (+) was for those recommendations based on ‘expert opinion’ or with a low body of evidence.

RECOMMENDATIONS

Forty recommendations were developed in total and recommendations 4 to 7 are of particular interest to dietitians. The

Extra mature cheddar (typically 12-15 months in age) and vintage cheddar (typically 15-18 months or more) from supermarkets and traditional farms were analysed and found to be suitable for use in galactosaemia. new international guidelines were published in 2016.12 The following questions were posed to the nutrition and dietetic subgroup: • What is the safe amount of dietary galactose (for the different age groups)? • Based on the answer to the above question: should fruit/vegetables/mature cheese/ offal/legumes be restricted in the diet? • Should the diet be evaluated regularly for deficiencies? Which deficiencies and how frequently?

Recommendation 4 (++) Clinicians should immediately commence a galactoserestricted diet (e.g. soy-based, casein hydrolysate or elemental formula) if classical galactosaemia is suspected in an infant, without waiting for confirmation of the diagnosis.

In the UK, there has been debate over the inclusion of infant soya formula in galactosaemia, due to the concerns about its mild oestrogenicity.

The 2013 UK COT report suggested that there should be no requirement to use soy-based infant formula in the UK, and proposed that alternative infant formulae be used.

In 2014, a review and meta-analysis demonstrated no effects on long-term growth, bone health and metabolic, reproductive, endocrine, immune and neurological functions, and neurocognitive parameters in children without galactosaemia treated with soy-based formula.4 Soya formula remains the product of choice in the UK. Amino acid formula containing

L-amino acids may be used, although these are more expensive and there is no obvious benefit to those infants using these formulae. Caseinbased formulae derived from milk casein are also used, but they do contain traces of residual lactose (<10mg/100ml). Whey-based formulae are not suitable. All clinics eliminate all animal milks from the diet.1,3 Recommendation 5 (expert opinion, +) We recommend treating patients with classical galactosaemia with a life-long galactose-restricted diet that only eliminates sources of lactose and galactose from dairy products, but permits galactose from non-milk sources that contribute minimal dietary galactose. Within this definition, we accept that small amounts of galactose are present in specific mature cheeses and caseinates. At present, there is insufficient evidence to support a specific age-related recommendation of the quantity of galactose allowed in the diet.

Recommendation 6 (+) We recommend allowing any amount and type of fruits, vegetables, legumes, unfermented soy-based products, mature cheeses (with galactose content <25mg/100g), and the food additives sodium or calcium caseinate, in the diet for classical galactosaemia. Although higher in galactose, all fermented soy-based products can be allowed in the small quantities that are typically used in the diet.

The opinion about whether to restrict offal in the diet is divided; its galactose content is unknown, but there is no direct evidence of harm. It is a theoretical risk only, therefore it has been decided to put offal www.NHDmag.com August/September 2017 - Issue 127

39

IMD WATCH: GALACTOSAEMIA Figure 1: Cheese allowed and not allowed in Galactosaemia

Cheese in GalactosaemiaSUMMARY

• • • • • •

•

ALLOWED Emmental Gruyere Comte Jarlsberg All UK extra mature and vintage cheddar Italian Parmesan/ Grana Padano Vegan cheese

in the ‘in moderation’ section in the ‘Current diet restriction for Classical Galactosaemia’ table.

In the UK, there has been a long-term policy of allowing all fruit, vegetables and legumes in the diet and so this recommendation is not altered. There is no evidence that this level of dietary galactose has any adverse effects on long-term clinical status. In fact, other countries are now adopting this dietary approach, after further analysis and review of the galactose content of fruit vegetables and legumes.5 The galactose intake from these sources is mostly less than 50mg/100g amounting to an estimated 54mg/day.6 This galactose intake is negligible compared to the endogenous galactose production in humans, which is thought to contribute to development of long-term complications. The endogenous production of galactose is highest in the newborns (>24.8mg/ kg/day) and falls to a minimum of 8.4mg/kg / day in adults.11 Mature hard cheese contains a low or negligible galactose content, and has been allowed in the UK since 2000. Based on experience, the amount of galactose allowed from cheese has now relaxed slightly to <25mg/100g. Cheese is a good source of calcium and other nutrients and helps to give variety to 40

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• • • •

• • •

NOT ALLOWED Soft cheese Young or mild Cheese Cheese spread Manufactured cheese dishes Brie, Wensleydale, Stilton All other cheddar Lactofree cheese

the diet. Recent analysis of extra mature and vintage cheddar in the UK means that these types of cheese are now allowed. Extra mature cheddar (typically 12-15 months in age) and vintage cheddar (typically 15-18 months or more) from supermarkets and traditional farms were analysed and found to be suitable for use in galactosaemia. A list of suitable cheese in the UK is given in Figure 1.

Low lactose milk, cheese and products are not allowed in galactosaemia. Lactose has been hydrolysed to glucose and galactose. Some may have been filtered ‘out’ but considerable galactose remains, even if the lactose content is low.

Offal has not been restricted in the UK for many years, whilst it has been restricted in other countries. The decision to allow it in moderation in the recommendations does not affect UK practice, and there is no evidence to show that outcomes from the UK (where offal is allowed) are any different from other countries where it is not. There is very little evidence to date on the galactose content of offal.

Caseinates have been restricted in the UK, but in practice, these are very low in galactose.

Therefore, caseinates used as additives are now allowed in the UK. In practice, most food labels

identify only milk, milk powder or skimmed milk powder on the label rather than individual proteins such as casein or whey. The addition of caseinates will make little difference to the quality or variety allowed in the diet.

There is a continuing debate about possible dietary relaxation with increasing age, but no definite recommendation can be given.

There is concern that an overly strict galactose restriction may be harmful.7 Short-term studies have indicated that intakes of oral galactose in adults and adolescents of 4,000mg galactose over 14 weeks had no effect on RBC Gal-1-P concentrations and no clinical manifestations were observed in this time frame. Overall experience is limited and there is insufficient evidence to support discontinuation of a galactose restricted diet. However, two case studies were reported of adults who were homozygous for Q188R and were ingesting 2,500 and 9,000mg galactose per day respectively, and whose outcome was comparable to those seen in treated adults.8,9

be undertaken regularly according to current bone health guidelines. A follow-up DXA scan is recommended every five years with appropriate treatment accordingly.

Recommendation 7 (+) We recommend an annual assessment of calcium and vitamin D intake with measurement of OH-vitamin D levels. Both calcium and vitamin D should be supplemented as necessary, following the age-specific recommendations for the general population.

Patients with galactosaemia are at risk of calcium and vitamin D deficiency because of cowsâ&#x20AC;&#x2122; milk avoidance. It is thus important to regularly monitor the intake of nutrients associated with bone health. High calcium foods should be encouraged with milk replacements enriched with calcium and vitamin D. Vitamin D is necessary for calcium absorption and its biochemical status requires monitoring. In addition, a good balanced diet is generally important for bone health with plenty of fruit and vegetables.

CONCLUSIONS

BONE HEALTH

There was a recommendation that bone mineral density screening, e.g. DXA, should

BLOOD TESTS

Monitoring of blood biochemistry is an area of some uncertainty. There are doubts about the ability of red blood cell Gal-1-P to monitor quality of control and dietary adherence. There is little association between galactose metabolites and long-term complications. The new guidelines suggest measuring red blood cell Gal-1-P at diagnosis and after three and nine months on a galactose restricted diet. They stabilise at an individual level that is usually higher than in the general population.

After the first year of life, red blood cell Gal-1-P should be measured annually until an individual baseline has been achieved. Further monitoring of red blood cell Gal-1-P is only recommended if there is a concern over increased galactose intake and intoxication.

There is much further information on how to manage fertility and many of the learning problems and neurological complications that are seen in galactosaemia. The guidelines are published in the Journal of Inherited Metabolic Disease (JIMD) as a short report highlighting the actual recommendations.10 However, the long paper is very informative and gives a rounded background to the many areas of uncertainty, and also explains how the recommendations were established.

The recommendations and guidelines are the first international evidenced-based guidelines for diagnosis, treatment and follow-up of galactosaemia. There is limited information at present and there are many areas where additional information and evidence is needed.

However, in the UK, the current dietetic management strategies are broadly in line with the guidelines and dietitians should be aware of the small but important changes highlighted.

For full article references please email: info@networkhealthgroup.co.uk

www.NHDmag.com August/September 2017 - Issue 127

41

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CLINICAL

Kate Roberts RD Freelance Dietitan Kate is a Freelance Dietitian with a wide range of clinical experience of working with adults and children from previously working in the NHS, her specialities are Diabetes and Allergies.

CASE STUDY: ENTERAL FEEDING AND NUTRITION SUPPORT IN A PATIENT WITH DUCHENNE’S MUSCULAR DYSTROPHY This is a case study of a 17-year-old boy with Duchenne’s muscular dystrophy (DMD). His case was complicated due to ensuring his wishes, family dynamics and problems with establishing his weight.

I first met Master M when he was referred to the Nutrition and Dietetic Service when he needed nasogastric (NG) feeding on the ward. There was no weight completed on admission. He had been admitted due to shortness of breath and a productive cough and was diagnosed with a lower

respiratory tract infection. His previous medical history included DMD and one previous admission for pneumonia.

Master M was wheelchair bound and lives with mother and siblings. His mother is his main carer. The only medicine he had been taking was Movicol.

1 ASSESSMENT Weight history: 54kg 15 months ago, unable to weigh on the ward.

Nutritional diagnosis: Inadequate energy intake related to dysphagia evidenced by deteriorating nutritional status and chest infection.

Overall aims of treatment as an inpatient To meet the patient’s estimated nutritional requirements via nasogastric (NG) feeding by Day 6 of his regimen.

To prevent any further weight loss by meeting his estimated nutritional requirements by Day 6 of his feeding regimen.

To re-establish oral intake hopefully within one month as directed by Speech and Language following a videofluoroscopy (VFS).

First assessment on Day 6 of inpatient stay Anthropometrics Weight: 47kg, height 1.572m, BMI: 19kg/m2. Approximation based on discussion with mother. However, he appeared undernourished.

He was already being seen by the Physiotherapists and Speech and Language Therapists (SLT). An SLT had advised stage 1 fluids via teaspoon only and nil by mouth would be safest for food, NG tube if for active treatment. They also arranged a VFS. Master M reported that he will be drinking up to 800mls as per SLT recommendations. He was nil by mouth. The NG feed was on the out-of-hours regimen and ran at 20ml/hr the day before until 0100hrs.

Master M and his mother consented to the NG tube. He was keen to only have NG feed during the day and wanted to be able to switch it off for bathroom breaks and physiotherapy.

2 IDENTIFICATION OF NUTRITION AND DIETETIC DIAGNOSIS Objectives: At initial assessment, estimate nutritional requirements based on estimated weight using Schofield.

Meet estimated nutritional requirements via NG tube by Day 6 of feeding regimen.

Continued overleaf . . .

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43

CLINICAL Medical team to monitor biochemistry (potassium, phosphate, magnesium and corrected calcium) daily until feeding regimen is established by Day 6 to reduce risk of refeeding syndrome.

Nursing staff to monitor feeding position, tolerance, fluid balance and bowels closely to reduce complications and ensure patient does not aspirate.

Accurate and timely records should be kept to ensure effective monitoring of patient.

Estimated nutritional requirements: Schofield, as Henry does not cover <18 years old1 BMR: 17.7 x 47 + 657 = 1,489 X 15% DIT = 1,712 Protein: 50-59g (0.17-0.20) Fluid 1,645ml Na (mmol) 1 x 47 = 47 K (mmol) 1 x 47 = 47 3 PLAN NUTRITION AND DIETETIC INTERVENTION Proposed treatment plan Nursing staff to weigh patient before next review.2 Nursing staff to feed via NG feed as per regimen outlined below.1,3 Medical team to monitor potassium, phosphate, magnesium and corrected calcium daily until stable, correct if needed.1, 3 Nursing staff to monitor feeding position, tolerance, fluid balance and bowels.1,3 800mls of stage 1 fluids via teaspoon as per SLT recommendations.

Table 1: Feeding regimen: Day

Feed

Rate

Fluid

Provides

1

300ml Nutrison Standard

30mls/hr over 10 hrs

800ml fluid orally and 550ml extra flushes

300kcals, 12g protein, 1,650ml fluid

2

500ml Nutrison Standard

50ml/hr over 10 hrs

800ml fluid orally and 350ml extra flushes

500kcals, 20g protein, 1,650ml fluid

3

750ml Nutrison Standard

75ml/hr over 10 hrs

800ml fluid orally and 100ml extra flushes

750kcals, 30g protein, 1,650ml fluid

4

500ml Nutrison Concentrated

50ml/hr over 10 hrs

800ml fluid orally and 350ml extra flushes

1,000kcals, 37.5g protein, 1,650ml fluid

5

750ml Nutrison Concentrated

75ml/hr over 10 hrs

800ml fluid orally and 100ml extra flushes

1,500kcals, 56.25g protein, 1,650ml fluid

6

850ml Nutrison Concentrated

85ml/hr over 10 hrs

800ml fluid orally and 100ml extra flushes

1,700kcals, 63.75g protein, 1,750ml fluid

4 IMPLEMENT NUTRITION AND DIETETIC INTERVENTION Day 6 Discussion with SLT: M has started having food at mealtimes.

Still due to have a VFS and continue with NG. Oral trials: normal liquids, mash/puree options, small amounts for meals, e.g. ice-cream/scrambled egg/Weetabix. I requested food record charts.

Day 8 review There was no new weight. There were ongoing discussions whether he should have a PEG fitted. Medically he was dehydrated and they queried whether he had worsening pneumonia. Master M had decided he wanted to eat and his SLT had explained the risks associated. He was still happy to have a VFS. Potassium and phosphate both had to be replaced due to being low on Day 4 of the admission, this is on Day 2 of the out-of-hours NG feeding regimen and indicated to me refeeding syndrome. Phosphate levels are a

44

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Table 2: Biochemistry Day in hospital Na 135-145mmol/l K 3.5-5.5mmol/l Ur 2.5-6.5mmol/l Cr 55-100umol/l Bilirubin ALK Phos 35-104U/I ALT 0-45U/I T Pro60-80g/l Alb 35-50g/l CCa 2.2-2.65mmol/l PO4 0.7-1.4mmol/l Mg 0.7-0.95mmol/l

Day 4 139 3.2* 0.6* <20* 15 74 54* 66 40 2.49 0.47* 0.77

Day 6 138 4.3 2.2* 6* 15 85 47 76 44 2.54 1.29 0.83

good marker for RFS5 and although the potassium is slightly below normal levels, it confirms it.

Staff nurse reported that Master and mum did not want the NG feed, just Weetabix. When I spoke to them they reported that they did not realise he could have both at the same time.

Day 12 Discharged from ward. NGT had come out. Medics report eating and drinking (however, SLT reported that there is only one packet of crisps and a glass of milk documented all weekend).

Safest texture would be mashable diet and stage 1 fluids, however, the patient has decided to accept risk of aspiration and have normal food and fluids.

For follow up in community.

5 MONITOR AND REVIEW It is difficult to assess if there had been any progress or positive outcomes from his inpatient stay. The patient was not weighed at any point. Daily requirements were therefore estimated, which gave something to aim towards. However, we did not meet the objective of meeting these requirements as the patient was discharged before he was weighed. The medical team did not check the patientâ&#x20AC;&#x2122;s biochemistry after Day 6 despite being asked which was potentially dangerous as outlined below. There was also confusion over his NG feed. It was unfortunate that it was not flagged up that the patientâ&#x20AC;&#x2122;s mother had learning difficulties. The nursing staff reported that the patient and mother were refusing the NG feed, however, they did not realise that they could have the feed and oral intake at the same time. If the nursing staff realised that his mother did not understand, they would have perhaps taken more time to explain rather than assuming that they were refusing treatment. The objectives were, therefore, not met.

The patient had been eating before he was put nil by mouth. On Day 2 of the out of hours feeding protocol, his phosphate and potassium were low and then were corrected. At the time, I felt that he was still at risk of refeeding syndrome which was reflected by his abnormalities in biochemistry and malnourished appearance.

In the care plan, it was outlined for the medical staff to monitor and correct K, PO4, Mg, CCa daily until stable.

His feed was started at less than 50% of his total energy requirements. Pabrinex should have been given on Days 1 and 2 of the out-of-hours feeding regimen. He should also have been prescribed thiamine, vitamin B Co Strong and multivitamins as outlined in NICE guidance3 Was he discharged from hospital too early? He was not established on a feeding regimen or on oral feeding.

On reflection, I would now try to keep him in hospital for longer, if we had had a weight, the decision could have been based on his low BMI. He was never fed past Day 2 of the feeding regimen as the tube came out. He would probably have refused to have another NG passed. However, if his weight had been known, PEG insertion may have been requested at the time.

If it had reached Day 6, his feeding regimen would have provided above his requirements by: 100kcals, 10g protein and 300mls fluid. There would not have been a problem with the extra kcals and protein but it could have led to him being fluid overloaded.

Continued overleaf . . .

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45

CLINICAL This highlights the importance of getting a timely weight on admission. This should now have been addressed due to the new local guidelines on malnutrition screening on arrival. The CQC has also recently been in the hospital and have reiterated the importance of correctly completing MUST training. The dietetic department has offered training to all nursing staff subsequently.

6 EVALUATION After his discharge home, I telephoned promptly to speak to his mum and then liaised with his community nurse.

We arranged a joint visit. I was then able to estimate his nutritional requirements which at the time were less than his reported estimated oral intake. He was taking the vitamins A, D, E and C. Master M’s BMI was on the 0.4th centile line, his height was between the 0.4th and 2nd centile. His weight was well below the 0.4th centile for his age.

I should have perhaps discussed gastrostomy feeding with the patient earlier. He was just very keen to eat normally when he was discharged. And discharged without my knowledge. Also, we did not have an accurate weight as the ward staff had not weighed him.

Home gastrostomy feeding does not always improve quality of life (QoL) in adult patients,4 despite preventing weight loss and improving some aspects of quality of life (QoL). However, Sullivan et al found a significant improvement in the QoL of carers of children with cerebral palsy, which is partly due to a decreased concern regarding their nutritional status. It has been found that if parents of children with severe developmental disabilities are well informed of the benefits, then they would agree to earlier PEG placement.6 PEG placement is safe and can improve the QoL of the family and the child’s global status.6 Often parents are reluctant due to worries regarding potential complications. The majority of DMD patients and their families are pleased about the PEG placement and benefits include amelioration of malnutrition as well as improvements in swallowing and respiration.7 It is recommended that gastrostomy placement should be encouraged when swallowing problems have just started to decrease risks of respiratory failure and peritonitis.7 Gastrostomy placement can improve nutritional outcomes and is generally well tolerated with few complications.8 Another thing that could have been considered was supplementing Master M’s diet with Creatine Monohydrate.9 A Cochrane review10 reported that this amino acid helped increase muscle strength, lean muscle mass and bone density in patients with neuromuscular disease (NMD). It was also found that in patients with DMD glutamine, as well as other amino acids, also inhibited protein degradation.11 Although Master M’s direct nutrition, clinical and health status did not improve, I believe that his treatment was always patient centred. His wishes were always taken into consideration and respected, despite the risks of eating and drinking normal foods and fluids. Patients can refuse suggested treatments if they are mentally competent, even if it does not seem to be in their best interests.12 I believe that Master M’s quality of life has been maintained even at risk of aspiration.

Master M was not known to the dietetic service before his hospital admission. It is strange that he was not referred to our Paediatric dietitians earlier. Parents with learning disabilities often find it difficult to access services for when their children are in need and require extra help with getting support.13 He had not been weighed for a year.

Hopefully with the compulsive MUST screening, future patients will be seen in a more timely fashion.

References 1 Todorovic VE and Micklewright A (2011). Pocket Guide to Clinical Nutrition, 4th Edition. The Parenteral and Enteral Nutrition Group of the British Dietetic Association 2 Bushby K et.al (2009). Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. The Lancet [online].

DOI:10.1016/S1474-4422(09)70272-8 3 Nutrition support in adults. Clinical guideline CG32, 2006, www.nice.org.uk/page.aspx?o=cg032 4 Loeser C, von Herz U, Küchler T, Rzehak P and Müller MJ (2003). Quality of life and nutritional state in patients on home enteral tube feeding. Nutrition. Vol 19, Issues 7-8, July-August, Pages 605-611 5 Khan LUR, Ahmed J, Khan S and MacFie J (2011). ‘Refeeding syndrome: a Literature Review’. Gastroenterology Research and Practice, Vol 2011, Article ID 410971, 6 pages, 2011. doi:10.1155/2011/410971 6 Martínez-Costa C, Borraz S, Benlloch C, López-Sáiz A, Sanchiz V, Brines J (2011). Early decision of gastrostomy tube insertion in children with severe developmental disability: a current dilemma. Journal of Human Nutrition and Dietetics, Vol 24, Issue 2, pages 115-121, DOI: 10.1111/j.1365-277X.2010.01146.x 7 Mizuno T et.al (2012). Efficacy and tolerance of gastrostomy feeding in Japanese muscular dystrophy patients. Brain & Development, Vol 34, pp 756-762, doi:10.1016/j.braindev.2011.11.012 8 Martigne L, Seguy D, Pellegrini N, Orlikowski D, Cuisset JM, Carpentier A, Tiffreau V, Guimber D, Gottrand F (2010). Efficacy and tolerance of gastrostomy feeding in Duchenne muscular dystrophy. Clinical Nutrition, Vol 29, pp 60-64. doi:10.1016/j.clnu.2009.06.009 9 Davidson ZE and Truby H (2009). A review of nutrition in Duchenne muscular dystrophy. J Hum Nutr Diet, 22, pp 383-393. doi:10.1111/j.1365-277X.2009.00979.x 10 Kley RA, Vorgerd M and Tarnopolsky MA (2007). Creatine for treating muscle disorders (Review). Cochrane Database Syst. Rev. 1, CD004760 11 Mok E et.al (2006). Oral glutamine and amino acid supplementation inhibit whole-body protein degradation in children with Duchenne muscular dystrophy’.

Am J Clin Nutr, Vol 83, pp 823-8. [Online] Accessed from ajcn.nutrition.org on May 28, 2013 12 Mental Capacity Act (2005). c9, London: HMSO. Available at www.legislation.gov.uk/ukpga/2005/9/contents 13 MENCAP (2011). Inclusive support for parents with a learning disability www.mencap.org.uk/sites/default/files/documents/2011-03/making the difference.pdf

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For full article references please email info@ networkhealth group.co.uk

48

The rising prevalence of obesity and the impact of excessive body fatness on the risk of Type-2 diabetes, cardiovascular disease and certain cancers are well-documented and are rightly a focus for public health interventions.

With obesity rates increasing in adults and children, all developed countries are reporting high levels of obesity among women of childbearing age. This has important consequences for maternal and foetal health during pregnancy and potentially for the longer-term health of the children of obese women.

Maternal obesity during pregnancy increases the risk of adverse pregnancy outcomes, including miscarriage, gestational diabetes and hypertensive disorders.1 Obesity is recognised as a significant risk factor for maternal and foetal death. It is also well-established that obese mothers are more likely to experience complications during labour and post-delivery, with more labour induction, caesarean section, wound infections and genito-urinary tract infections.1 There has been a dramatic increase in the prevalence of all grades of obesity since the turn of the century. Twenty percent of UK women aged 16 to 44 years were obese in 2010 and in the USA, this figure was approximately 32% in the 20- to 39-year-old population. Morbid obesity is an increasingly common complication of pregnancy and in 2009, approximately 5% of all pregnancies in England were associated with a maternal body mass index (BMI) >35kgm2, with approximately 2% of pregnant women having a BMI >40kgm2.

In addition to increasing the risks of poor pregnancy and labour outcomes, antenatal obesity is associated with longer-term issues. Maternal obesity is associated with greater risk of metabolic and cardiovascular disease

www.NHDmag.com August/September 2017 - Issue 127

in the exposed child as she/he grows into adulthood.2 There is also longerterm risk for the mother and any future pregnancies, as excessive weight gain in pregnancy can be difficult to reverse.

For this reason, there is now a strong focus on managing maternal weight and weight gain during pregnancy in order to minimise these risks. The US Institute of Medicine3 has published guidance on optimal ranges of weight gain during pregnancy (Table 1), which are based upon pre-pregnancy BMI. Thus, the guidance for obese women varies substantially to that for women of normal weight. The UK does not have any formal, evidencebased recommendations for healthy weight gain in pregnancy, although a guidance range of 10â&#x20AC;&#x201C;12.5kg is included within Department of Health literature.

However, the National Institute of Health and Clinical Excellence (NICE) guideline of 2010 recommends that health professionals carefully manage maternal weight. The emphasis of these guidelines is on weight loss prior to or after pregnancy.4 Weight loss is not advised during pregnancy because it may pose a risk to foetal development.

Having recognised maternal obesity and excessive weight gain in pregnancy as a problem, there is a clear need to take action. The antenatal period is often considered an ideal time for health education, as mothers are generally receptive to encouragement from health professionals to make lifestyle changes that could benefit the health of their babies. However, there

Table 1: US Institute of Medicine guidelines for weight gain in pregnancy Pre-pregnancy BMI <18.5kg/m2 (Underweight)

Total weight gain (kg)

Total weight gain (lbs)

12.5-18.0

28-40

18.5-24.9kg/m2 (Normal weight)

11.5-16

25-35

25.0-29.9kg/m2 (Overweight)

7-11.5

15-25

5-9

11-20

>30.0kg/m2 (Obese)

is a significant history of intensive intervention programmes which have failed to deliver the expected outcomes. In Australia, the LIMIT trial5 used research staff based in public maternity hospitals to deliver a comprehensive diet and lifestyle intervention. The 1,108 women completing the programme did not, however, gain less weight in pregnancy, nor were pregnancy outcomes improved compared to women receiving standard antenatal care. The same disappointing outcome was reported from the UK UPBEAT study,6 where obese pregnant women completed a complex intervention to increase physical activity and reduce intake of saturated fat and foods with a high glycaemic load. The intervention was delivered by health trainers who set weekly SMART goals. The 773 women completing the intervention successfully improved their diet but failed to increase physical activity. The intervention did not impact on antenatal weight gain or occurrence of gestational diabetes and other complications.

LIMIT and UPBEAT were large randomised intervention trials that were carefully and robustly performed using fixed, standardised protocols. The latter may be a reason why they, and other similar trials, were unsuccessful.

Capturing and making best use of pregnancy as a teachable moment may depend heavily on good interpersonal relationships being built between pregnant women and those responsible for the intervention, and upon those relationships being flexible and responsive to individual needs.

The Bumps and Beyond programme which ran in Lincoln from 2012 until 2016, was a community intervention rather than a randomised-controlled trial. It focused upon severely obese women (BMI>35kg/m2) to deliver a lifestyle change that focused on diet and physical activity. The intervention was designed to be delivered as eight sessions by a specialist healthy lifestyle midwife and three healthy

lifestyle advisors, all of whom were trained and experienced in delivering behaviour change for weight loss and interventions for families. There was no rigid protocol or goal setting and, instead, the team tailored their sessions to the individual and encouraged small and achievable changes to diet and activity.7 This approach resulted in a marked reduction in weight gain between first and third trimesters, a 55% decrease in prevalence of post-partum haemorrhage and a 90% reduction in pre-eclampsia.

Whilst Bumps and Beyond was extraordinarily successful in the region where it had been designed, rolling the same programme out to a markedly different population (more women from dense urban areas, more diverse ethnic mix, delivery by midwives, inclusion of women with BMI>30kg/m2) failed to replicate the outcome. This suggests that success is highly dependent on the setting, the nature of the carerclient relationship and the cultural background of the women. A very low uptake of the intervention in the diverse urban population was commonly associated with a refusal to accept that weight was a problem and the view that being overweight is â&#x20AC;&#x2DC;normalâ&#x20AC;&#x2122;. It is recognised that discussing obesity in a non-judgemental manner is a challenge for many health professionals.

CONCLUSION

To be successful in combating the adverse effects of obesity in pregnancy, we need a client-centred, informal, flexible and culturallysensitive methodology. At present this approach is lacking in the majority of interventions to limit the impact of antenatal obesity8 and whilst most women are given no advice about weight, those who do, often receive advice that is brief and unpersonalised.9 If we are to make the most of the opportunities that routine contact with pregnant women provides, then a rethink of antenatal care may be required. www.NHDmag.com August/September 2017 - Issue 127

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DATES FOR YOUR DIARY

Coming up soon . . .

UNIVERSITY OF NOTTINGHAM SCHOOLOF BIOSCIENCES Modules for Dietitians and other Healthcare Professionals • Obesity Management (D24BD3) 3rd/4th October, 5th/6th December • Gastroenterology (D24GE1) 10th/11th October, 12th/13th December For further details please contact email Katherine.lawson@nottingham.ac.uk or check out the University website at www.nottingham. ac.uk/biosciences and click on 'Study with us' and then 'short courses' which will take you to 'for practising dietitians'.

IFSO 2017 - International Federation for the Surgery of Obesity & Metabolic Disorders 29th Aug to 2nd Sept The QEII Centre, London www.ifso2017.com/ Recipe Analysis: Maximising Accuracy 8th and 12th Sept One-day course - On behalf of Nutrition and Wellbeing Kings College London Email: susan@susanchurchnutrition.co.uk Tel: 07719 381949 Next steps for UK food labelling policy and opportunities post-Brexit 12th Sept Central London Email: info@forumsupport.co.uk ME-CL1: Mindful Eating-Conscious Living 4th to 29th Sept Woodbrooke Quaker Study Centre, Birmingham www.drjackiedoyle.com

To place a job ad here and on www.dieteticJOBS.co.uk please call 01342 824023 dieteticJOBS.co.uk

EDUCATION DIETITIAN - S & E ENG - £30-35K WATERFALL CATERING GROUP Salary: £30-35K dependent on experience and qualifications. Full-time permanent position Waterfall Catering Group is a contract catering subsidiary of Elior UK specialising in food services to the Care and Education markets through its brands Caterplus and Taylor Shaw and Edwards and Blake. We are seeking a full-time Dietitian to support our rapidly expanding education business Taylor Shaw and Edwards and Blake. You will be based in the South of England providing support to our Southern Education business. You will be part of

a small dynamic nutrition team, and will also work directly with our operating business team to ensure the delivery of comprehensive nutrition and dietetic services. You will have exceptional communication and IT skills and an ability to prioritise activities and manage expectations. The role will involve planning and administering nutrition and dietetic activities, using your technical skill set and working with wider teams to ensure evidence-based practise runs in conjunction with the best commercial outcomes. For further information and to send your CV, please contact rosanna@gartonhardy.com; Closing date: 18th August 2017.

dieteticJOBS.co.uk The UK’s largest dietetic jobsite since 2009

To place an ad or discuss your requirements please call

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Louise Robertson Specialist Dietitian Louise is a Specialist Dietitian working with adults with inherited metabolic disorders, with PKU being her biggest cohort of patients.

Welcome to our new column in Network Health Digest. What an honour to be asked to take this over from Neil Donnelly who has entertained us with his Final Helping over the years. We hope we can live up to his standards.

Enjoy your retirement Neil!

Sarah Howe and I teamed up to write our blog Dietitian’s Life back at the beginning of 2015 with the aim to promote good nutritional messages and the life of a dietitian over social media. "Thank you" to NHD’s Editor, Emma, for asking us to spill a little of our blog over into this column here.

In June, I volunteered to man the BDA stand at the Summer Good Food show at the NEC in Birmingham. It’s a great fun show; the NEC is just down the road from me and when I have been before, there has been a lot of nutrition nonsense spouted!

Having a dietitian drop-in clinic was sure to bring some nutritional credibility to the show. The stand was situated in the Eat Well corner, next to the Healthy Kitchen stage. We were opposite Coeliac UK, and a fermented food stand, but also next to a stand promoting detoxes!

It was a slow start (at 9am), we handed out the BDA Eating Well, Living Well magazine to passers-by, trying to encourage them onto the stand. By midday, people were queuing to sit down and talk to us. People had all sorts of questions for us and the advice ranged from cholesterol lowering, eating with a hiatus hernia, unable to lose weight and gut problems, such as constipation and irritable bowel syndrome symptoms.

One lady wanted advice after she had been to a nutritionist who had told her that she should be on a low-carb, sugarfree diet to lose weight. This included cutting certain fruits out of her diet such as apples. She moaned to me about not being able to take an apple to work every day. The first thing I said was, “Have your apple, as there is no need to cut fruit out of your diet.”

At 1.15pm, I managed to escape and run over to the Healthy Kitchen stage to watch gut specialist dietitian, Dr Megan Rossi, give a talk on fermented foods. She demonstrated how to make kefir (a fermented milk drink) and kombucha (fermented pineapple drink) to produce probiotics for good gut health. She did a great job, we need more dietitians on the stages, especially as the other talks that day on the Healthy Kitchen Stage included how to make sugar-free raw cakes with ingredients including rice malt syrup and coconut sugar!

After our stint on the stand, we were then free to look round the rest of the show. I love tasting the food and drink and looking for new gadgets. Fellow dietitian Claire and I stumbled upon a salesman selling Palmyra tree blossom sugar at a great price. We heard the lady next to us ask for three bags, telling the salesman that she had cancer and she couldn’t eat white sugar. No wonder the public is confused, we were trying to get our evidence-based nutritional messages across one side of the show and in other parts, sugar ‘alternatives’, raw, clean eating and detoxing are being touted as normal and healthy!

As dietitians and registered nutritionists, we need to be the source of honest nutritional messages so that people don’t fall for the snake oil salesmen as much as they are doing and compromising their health - or indeed wasting their money!

Nevertheless, I had a great day volunteering at the Good Food Show and would recommend other dietitians to take part in the future. Louise

www.NHDmag.com August/September 2017 - Issue 127

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