Children's Health Ireland Q2 - Jun 2019

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VIVIENNE HOUGH In 2017, measles caused the equivalent of 301 preventable deaths every day. » p4

ETAIN KETT Helping children take good care of their teeth is starting habits that will last them all their lives. » p6

CATHERINE CARROLL Making well-informed decisions on how best to feed your baby will have a lasting impact. » p6

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The challenges and opportunities for children’s healthcare in Ireland More must be done to keep our children healthy and ensure services are there to care for them when they are sick, says Dr Ellen Crushell, Dean of the Faculty of Paediatrics, Royal College of Physicians of Ireland.

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t's an exciting time for children’s healthcare in Ireland.

First of all, there's the development of a new, world class children's hospital to respond to children's complex care needs, giving us a wonderful opportunity to improve health for all children.

There is an enthusiasm and energy associated with this, and other changes, within child healthcare in Ireland.

Improving working conditions for doctors Yet challenges exist. We need to recruit many more paediatricians as, with just 200, we fall far below the OECD average. Croatia, for example, has 700 for a similar population.

Irish paediatricians are highly valued abroad and contributing significantly to child health in many other countries. The current situation with pay inequality needs to be urgently resolved to entice these paediatricians to return home to work alongside their colleagues.

We have serious inequities in access to child health services, in particular for child and adolescent mental health services. Children in need of mental health services are

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presenting in crisis in rising numbers to our emergency departments.

One in 10 children lives in consistent poverty and although it is 30 years since the UN Convention of the Rights of the Child, we have a housing crisis with thousands of our children living in inadequate housing.

New therapies now available for previously untreatable conditions My own special interest is in inherited metabolic disorders, wh ich occ u r when abnor ma l chemical reactions interfere with the body's ability to break down proteins, fats and carbohydrates from food.

A l l newbor n s a re sc reened v i a t he ‘ he el-pr ic k te s t ’ for six metabolic disorders (other countries screen for many more), along with hypothyroidism and cystic fibrosis. Ireland was the first country to introduce a national screening programme for phenylketonuria (PKU) over 50 years ago, a condition that, if untreated, results in severe brain damage.

New therapies are now available for previously untreatable conditions and we need to consider further

One in 10 children lives in consistent poverty and although it is 30 years since the UN Convention of the Rights of the Child, we have a housing crisis with thousands of our children living in inadequate housing.” expansion of newborn screening to improve outcomes for children with some of these disorders.

There are more than 700 individual metabolic disorders, with more being added to the list all the time.

Most of these conditions are very rare, although some are common in certain populations. Disorders s uc h a s PK U a re em i nent ly treatable and warrant newborn screening, but some other diseases are chronic, progressive, require complex management and, tragically, can be life-limiting.

U n f o r t u n a t e l y, b e c a u s e symptoms are often non-specific and some diseases are so rare, it can occasionally be difficult to arrive at a diagnosis, although that's improving, thanks to better screening and advances in genetic testing.

INTERVIEW WITH: DR ELLEN CRUSHELL Dean of the Faculty of Paediatrics, Royal College of Physicians of Ireland

When it comes to treatment, en z y me replacement t herapy (to replace a genetically absent enzyme) has been a great medical advance recently, and gene therapy is on the horizon. Yet these treatments are very expensive and need serious levels of investment, as do basic essential multidisciplinary care services, which should be available to all children with complex needs but, invariably, are not.

Prevention and better education for better child health Thankfully, children are physically healthier now than ever before.

Children thrive if they have the opportunity to live in safe communities and supportive environments that provide the right conditions and opportunities for them to attain their full potential.

While there will always be a place for medical management of unwell children, as a society, we need to increasingly move towards keeping them healthy.

Prevention is the answer and was t he t heme of t he recent E u ropae d iat r ic s C on g re s s i n D ubl i n. I nves t ment i n ea rly

childhood has been shown to be highly cost effective. Childhood obesity remains a major issue, for example, and must be tackled at societal level with better lifestyle and education. We need to pay more attention to our adolescents, a vulnerable group who are high healthcare service users. More, too, must be done to highlight the vital role that vaccines play in saving lives and preventing disability, in order to counter the alarming rise in distrust of vaccination.

These are some of the messages you'll read about in Children's Health, which explores prevention of conditions, treatment options and the support available to families, while dispelling some common myths.

The health of our nation is dependent on the health of our children. All of us — the government, medical establishments, families and communities — have our part to play, because children cannot achieve optimal health alone.

Written by: Tony Greenway Read more at healthnews.ie MEDIAPLANET

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Expanding newborn bloodspot screening for inborn metabolic disorders Since its beginning in the 1960s, the National Newborn Bloodspot Screening Programme (NNBSP) has been proven to be a great success in Ireland. The inherited metabolic disorders (IMDs), which are screened for are Phenylketonuria, homocystinuria, maple syrup urine disease, galactosaemia, glutaric aciduria and MCADD. Currently, NNBSP in Ireland only identifies these six IMDs, congenital hypothyroidism and cystic fibrosis.

PROFESSOR INA KNERR Consultant Metabolic Paediatrician, National Centre for Inherited Metabolic Disorders (NCIMD), Children’s Health Ireland (CHI), Temple Street NNBSP is considered to be one of the most successful screening programmes in medicine and public health. Ireland has a higher incidence rate for many IMDs than most European countries.

Undiagnosed, many IMDs can be fatal The goal of NNBSP for IMDs is to achieve early diagnosis and treatment, and thus to lower morbidity and mortality rates in children. However, many IMDs carry, unfortunately, a high fatality rate if left undiagnosed or contribute to the burden of childhood disease.

Wit h f u r t he r ad v a nc e s i n medicine, there are better diagnostic and monitoring tools available and new therapies emerging for IMDs, which had previously been

considered to be untreatable. The outcomes of NNBSP are overall reassuring, even though these disorders cannot be cured.

We need to be screening for more, treatable disorders Expansion of NNBSP to include other treatable IM Ds (in line with other developed countries) is required to avoid preventable morbidity and mortality among affected children. E valuation and implementation of NNBSP protocols and guidelines together with collecting clinical data is warranted to minimise disease burden and to ensure the best possible outcome a nd hea lt h services use.

In recent years, clinical services and work load at the National

PROFESSOR AHMAD A MONAVARI Consultant Metabolic Paediatrician, National Centre for Inherited Metabolic Disorders (NCIMD), Children’s Health Ireland (CHI), Temple Street

With further advances in medicine, there are better diagnostic and monitoring tools available and new therapies emerging for IMDs, which had previously been considered to be untreatable.”

Centre for Inherited Metabolic Disorders (NCIMD), Children’s Health Ireland at Temple Street have shown a remarkable increase, making it one of the biggest paediatric metabolic centres in Europe.

The ex p er t s at NC I M D h ave extensive collaborations internationally, which places Ireland every bit as much to the forefront of treatment as other countries. This is a very significant fact, bearing in mind that Ireland is a small

With thanks We would like to thank our patients and their families for their involvement in our clinical studies and everybody involved in patient care for their highly valuable input.

This publication was supported by the Research Department, Children’s Health Ireland at Temple Street.

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country and has only one National Centre for Metabolic Medicine for children.

We at NCIMD strongly support expanding NNBSP for IMDs in the Irish context, but this will only be possible if the necessary resources can be made available. NCIMD has completed a Model of Care as part of its Service Plan, outlining its basic requirements for providing the service as a National Centre. This includes a minimum of two additional consultant metabolic paediatrician posts as well as appropriate nursing posts and other service providers to promote and provide highest quality and research-led healthcare to children affected by IMDs and their families.

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Vaccination; it’s not just a personal choice VIVIENNE HOUGH Commercial Affairs Manager, Irish Pharmaceutical Healthcare Association

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Vaccine hesitancy and the threat to global health DR ANN HOGAN Former President, Irish Medical Organisation (IMO) and Chair, IMO Public and Community Health Committee

The World Health Organization WHO estimates that vaccines save up to three million lives each year1. With the exception of clean, safe drinking water, vaccination is one of the most successful and cost-effective public health interventions ever, says Vivienne Hough, Commercial Affairs Manager for the Irish Pharmaceutical Healthcare Association (IPHA). This success is increasingly under threat as vaccination uptake rates continue to fall.

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espite the availability of free and effective vaccines, some people make the personal choice not to vaccinate themselves or their children. However, she says, they may not be aware that this choice not to vaccinate has an impact on others by reducing uptake rates, which are needed to protect populations or for ‘herd immunity’.

What is ‘herd immunity’?

Herd immunity occurs when enough people within a population (or herd) have been vaccinated to reach the recommended threshold required to prevent the spread of a disease. When this is achieved, the high coverage makes it difficult for the disease to spread because there are so few people left to infect. This is particularly important for the protection of people who cannot be vaccinated.

This is why a personal choice not to vaccinate has an impact on others. Not only is it a decision that may put one’s own life, and that of one’s child, at risk, but it also puts those who come into contact with an unvaccinated person at risk.

Such contact is particularly dangerous for people with a reduced immune system, pregnant women or small babies who have not yet completed all their vaccinations. People who cannot be vaccinated are vulnerable and depend on others being vaccinated for their own protection.

For example, if a person develops measles, the chances of infecting a baby who is too young to be vaccinated is reduced if everyone else who can be vaccinated (the herd) has been.

Vaccine hesitancy Vaccine hesitancy is caused by several elements including misinformation, complacency and varying societal factors. This hesitancy reduces uptake rates and herd immunity.

A direct result of this is an increase in the number of global outbreaks of serious diseases, such as measles. For example, it is estimated that 110,000 people died from measles in 2017. Most of those who died were children under the age of five years. This equates to 301 preventable deaths every day or nearly 13 each hour. Aside from this, measles is a highly infectious and serious disease that can cause chest infections, fits, ear infections, swelling on the brain and brain damage.

Vaccines work They save lives and protect the wider community. It is important that stakeholders in Ireland work together to ensure people make decisions about vaccinations based on facts. This would help reduce vaccine hesitancy, increase uptake rates and herd immunity and dispel damaging myths about vaccination.

This will help stop the spread of vaccine preventable diseases.

1: World Health Organization. 10 Facts on immunization. Updated March 2018 [online] www.who.int/ features/factfiles/immunization/en/

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Vaccine hesitancy has been identified by the World Health Organization as one of the top 10 threats to global health. Here, Dr Ann Hogan debunks some of the myths that are leading to vaccine hesitancy and highlights the evidence that shows that vaccines work.

T

he World Health Organization has identified vaccine hesitancy as one of the top 10 threats to global health in 2019. Vaccine hesitancy is the growing reluctance of individuals to get vaccinated or to vaccinate their children and threatens to reverse the progress made in vaccine preventable disease.

Vaccination currently prevents t wo to t h re e m i l l ion deat h s worldwide every year and a further 1.5 million deaths every year could be avoided if vaccine coverage improved.

Vaccination has brought about the elimination of smallpox, a viral infection, which, in the past, was a very common cause of illness and death (30% of cases), especially in children. Smallpox has been declared eradicated worldwide since 1980.

Major outbreaks of ‘eradicated’ diseases Diphtheria, tetanus and polio were common causes of illness and death. Since the introduction of vaccines against these diseases, their incidence in Ireland has declined to minimal levels.

However, we know that keeping these diseases under control is dependent on high vaccine uptake.

When vaccination uptake declined in the Russian Federation in the 1990s, there was a major outbreak of diphtheria and over 150,000 cases a nd 4, 50 0 deat h s were reported.

Other vaccines introduced into the Irish primary childhood vaccination programme have resulted in decline in incidence of whooping cough (pertussis), rubella, mumps,

measles, various forms of bacterial meningitis and rotavirus infection.

MMR vaccine: the sideeffects of not vaccinating vs vaccinating We know that the MMR (measles, mumps, rubella) vaccine is highly effective against measles, with 99% of people developing immunity to measles after two doses of MMR. But we are seeing outbreaks of measles in Ireland and in several countries in Europe where MMR is part of the routine childhood immunisation schedule.

The viruses and bacteria that cause these infectious diseases have not gone away and, as we are seeing with measles at present, outbreaks will occur when uptake of vaccinations falls below optimal levels.

There is no cause for complacency about these diseases.

Many people express concern about side-effects of vaccination.

Vaccines do have side-effects, some of which are serious. However, the side-effects associated with getting the actual diseases are far worse than the side-effects of the vaccines.

If 1,000 children get measles: • 160 will get diarrhoea • 50 will get an ear infection • 40 will get a chest infection • five will have convulsions • one will develop encephalitis, which may result in brain damage or death.

One in 8,000 children who get measles under the age of two will go on to develop SSPE (brain degeneration) several years afterwards.

If 1,000 children get the MMR vaccine: • 100 will get redness and swelling at the injection site or will have a fever • 50 will get a rash 5-10 days after vaccination • One will have a convulsion • One in 10 million will develop encephalitis • One in 22,000 will get a temporary blood clotting problem Misinformation through social media Circulation of anti-vaccination information has been going on since smallpox vaccination was introduced over 200 years ago.

Unfor tunately, modern social media has made it easier than ever before to circulate information and misinformation, including misinformation about vaccines.

It is sad when outbreaks of previously-controlled infectious diseases occur in situations of war or other major events, but it is worse when vaccination uptake falls as a result of complacency or false concerns about side-effects.

Vaccines work. They prevent millions of deaths, mainly in children, every year.

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How to recognise the signs and complications of chickenpox Chickenpox is usually a self-limited condition that resolves itself within a matter of days. Yet complications can arise, so parents should be alert to more concerning symptoms.

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or most children, chickenpox is an unpleasant but relatively harmless experience.

Usually, infected children develop a fever and a characteristic rash, which appears as scattered small, raised, itchy, pink or red spots.

These evolve into small blisters with first clear, and then opaque, fluid. The blisters break down with the spots becoming dry and crusty.

The rash usually starts around t he head and neck w it h new crops of spots appearing every few days, progressing down the body to involve the hands and feet.

Sometimes people may first notice the rash on the back or tummy. The spots – or ‘pox’ – can even appear in the ears, eyelids, and inside the mouth. This sequence usually lasts five to ten days with the person making a full recovery.

Chickenpox is the result of an individual’s first encounter with the Varicella Zoster virus. Shingles, caused by the same virus, is the result of virus reactivation within the individual. In general, those who have had chickenpox will not get chickenpox again; but the virus stays in their system, becomes dormant and, in certain situations, reactivates in the form of shingles.

The risk of developing shingles

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increases with age. It is more common in the over 50s and if we live to 85 years of more, about 50% of people will have experienced an episode. While shingles is more common in those with weakened immune systems or in the elderly, anyone who has previously had chickenpox can experience an episode of shingles.

Be aware of the complications of chickenpox “For some children, chickenpox can develop into a more worrying condition,” says Professor Karina Butler. “Complications can arise from the chickenpox virus itself i.e. encephalitis, pneumonia and hepatitis. However, these rare complications generally only occur in those with an already weakened immune system,” she explains.

“In previously healthy children, the more common complications are due to secondary bacterial infections, arising because the skin has been breached. These include skin infection i.e. cellulitis, infections of the lymph glands and bone and joint infection. The chickenpox virus has also been recognised as a rare cause of stroke in children occurring not at the time of initial infection but during the

Ultimately, parents have to make their own decisions about whether their children should receive the chickenpox vaccine or not.” months to follow.”

It's important to be vigilant for sig ns of complications or secondary infection. For instance, if fever persists more than a few days or settles and then returns, or if spots are associated with spreading redness of the skin or become painful, or there is pain and swelling of a joint or limb, f u r t her exa m i nat ion w i l l be required.

Vaccinating against chickenpox “Secondary infections may require antibiotics.” says Professor Butler.

“But the best way to prevent complications from chickenpox is to prevent chickenpox itself, which is possible through vaccination.”

In the United States, a safe and effective vaccine to prevent chickenpox has been in routine use for children for over 20 years.

Chickenpox and its complications are now rarely seen there. Its use in Europe varies by country.

In Ireland, a safe, licensed vac-

INTERVIEW WITH: PROFESSOR KARINA BUTLER Consultant Paediatrician & Infectious Diseases Specialist Chair, National Immunisation Advisory Committee, Royal College of Physicians of Ireland cination is only available privately and it is not yet part of the National schedule. “In an ideal world, with no logistical or cost constraints, all safe and effective vaccines would be available without barriers to access,” says Professor Butler.

“However, there are a number of criteria vaccines must meet to be considered for addition to the schedule. First, they must be known to be safe and effective, there must be a significant benefit to the population, and finally prioritisation, costs, and logistical issues must be considered. The National Immunisation Advisory Committee is currently reviewing these issues with respect to the chickenpox vaccine.”

Don’t trust everything you read online Wor r y i ngly, i n recent t i mes, uptake of vaccinations generally— such as MMR and HPV vaccines — had fallen related to unfounded concer n s a nd m i si n for mation. Although the trend is now reversed, uptake has not reached the desired levels for maximum population protection. Professor Butler believes it's important to direct parents to sound information about vaccine-preventa-

ble diseases and the real value of immunisation programmes.

“If I use google or see information on social media, I can't always be sure of its validity without knowing the source of the information,” she says. “We have to highlight websites with good, reliable information that answers people's questions," Prof Butler told a delegation at Europaediatrics 2019 which was hosted by the Faculty of Paediatrics and took place in Dublin in June.

Ultimately, parents have to make their own decisions about whether their children should receive the chickenpox vaccine or not. “But it is a good vaccine that will prevent chickenpox 85 - 90% of the time, and will prevent 95% of severe secondary complications,” says Professor Butler. “It will save them getting sick, reduce the risk of complications, and save days off school. It has a lot of benefits.”

Written by: Tony Greenway

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Feeding and growing in the first year of life The first year of life is a time of dramatic growth and development for a baby. They will double their length, triple their body weight and experience brain growth at a rate that is never replicated again at any other age! Good nutrition is essential during this sensitive time period so that all this can be achieved.

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reast milk contains many health-conferring properties that science is – as yet – unable to fully elucidate or will ever be able to replicate. The milk a mother produces is unique to that baby and specifically tailored for every stage of its development. It is the perfect source of nutrition to support the rapid growth and development experienced during the first years of a baby's life.

Interestingly, the health benefits of breastfeeding have been proven to even extend long past the period of actual breastfeeding and into adult life. So, breastfeeding a baby will optimise their growth and development potential both now, and later in life.

The HSE national infant feeding guidelines recommend exclusive breastfeeding until six months of age, followed by the introduction of appropriate complementary foods and continued breastfeeding to the age of two years and beyond.

How to support breastfeeding In the early days, good support is crucial to help a mother learn how to position and attach baby correctly and establish a full milk supply. Ongoing positive support for the breastfeeding mother and baby from within their own family

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and from healthcare professionals (HCPs) will help prolong the duration of that breastfeeding relationship.

The HSE have developed a number of excellent, evidence-based resources for both parents and HCPs on a range of breastfeeding topics.

All the information for parents is now accessible through www. mychild.ie. It also has an 'ask our breastfeeding expert' facility where you can send any breastfeeding questions you may have, and you can even have a live chat. It also lists all the community breastfeeding groups available around Ireland that are an invaluable support to breastfeeding families. HCP breastfeeding factsheets can be accessed through the www.hse.ie website.

Formula feeding Some families may decide to use powdered infant formula to feed their baby. This decision should be an informed one, ideally after a discussion with a suitably qualified HCP. A whey-based first infant formula is the best choice for all infants up the age of one year.

The c omp o s it ion of i n fa nt for mu l a i s reg u l ate d by t he European Food Safety Authority to ensure that all products contain sufficient amounts of nutrients

CATHERINE CARROLL Registered Dietitian, International Board of Lactation Consultant Examiners

Interestingly, the health benefits of breastfeeding have been proven to even extend long past the period of actual breastfeeding and into adult life. So, breastfeeding a baby will optimise their growth and development potential both now, and later in life.” so that a baby can grow. While different brands will make claims on the ingredients in their product, it is important to know that if a certain ingredient had been scientifically proven to be of benefit to a baby, it would have to be added to all products by law.

There is no scientific evidence to support the use of ‘follow-on’ / ‘stage 2’ formula or formula marketed for ‘hungrier babies’. For further information on formula feeding visit www.mychild.ie or the website www.firststepsnutrition.org for excellent, independent, evidencebased advice.

Introducing solids An exciting milestone in your baby’s first year of life is the introduction of food around the age of six months or 26 weeks (and no earlier than 17 weeks). It is important to wait until the right time so that the baby is

physically ready to participate in the feeding process and that their body can process the food without strain on their digestive system or kidneys.

Here are some of the signs that a baby might be ready to start on solids: · Baby is able to sit up with support and can control their head movements · They are able to co-ordinate their hands to their mouth so they can pick up and eat food themselves · Able to swallow food Foods and textures to offer It is recommended that you start with a smooth, pureed vegetable.

You can introduce a new food every second day and slowly build up the number of spoon feeds per day. Try to offer a range of foods and different tastes so as to develop the baby’s palate.

It is also recommended that all babies and those with milk eczema have exposure to known food allergens such as milk, egg, fish, gluten, peanut (in the form of nut butters that are salt and sugar free) and tree nuts. Avoiding these foods will not prevent a food allergy.

By waiting until around six months of age it means that the baby

will be ready to move forward on the food consistency at a quicker pace.

By seven months of age they should be offered safe finger foods and foods that are of a mashed consistency.

Minced and chopped foods are recommended from 10 months of age onwards.

Try to keep meals homemade By 12 months of age, babies should be receiving a wide range of foods in line with what that the rest of family is eating. Commercial baby foods in jars and pouches are generally expensive, less nutritious and lack variety in taste and smell.

By offering homemade foods the baby will get exposure the range of different flavours and textures found in regular family foods.

For more in-depth information on weaning please visit www.safefood.eu and look for the ‘Feeding your baby: Introducing family meals’ booklet.

The first year of life is an exciting time for both a baby and its parents.

Making well-informed decisions on how best to feed your baby will have a lastly impact on their health.

Utilising the range of resources available listed above will help you on that amazing journey.

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Tips for healthy teeth for life AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

Tooth decay is the single most common chronic disease of childhood. It is also associated with diabetes, cardiovascular disease and obesity. Therefore, preventive measures and maintaining oral health are important for improving overall health.

H

e a lt hy baby teeth are important, especially for eating, talking and smiling and will pave the way for healthy adult teeth. By helping children take good care of their teeth, you are starting habits that will last them all their lives.

Tooth tips for 0-2 years When a baby is born, the first set of teeth is already there, under the gums. Use a clean damp cloth to clean baby’s gums after a feed, and then a soft toothbrush with water once the first tooth appears. Don’t use toothpaste unless advised by your dentist.

Don’t let baby sleep with a bottle in its mouth, and don’t put sweet drinks, juice, tea or fruit drinks in baby’s bottle. Instead, encourage

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drinking from a free-flowing sippy cup from six months. We also advise against dipping soothers in honey, jam or anything sweet (only use an orthodontic soother, and wean the baby off it as soon as possible, as it can affect the way a baby’s teeth grow).

Be aware that the bacteria that cause tooth decay can be transferred from a parent/carer to an infant through sharing of spoons and cups, or licking soothers.

Teething Symptoms may include disturbed sleep, feeding irritability and swollen, tender gums.

The most common side-effect is drooling or dribbling. Try giving baby something to chew on, such as a cooled teething ring. Milk or

cooled boiled water may also help. If necessary, ask your doctor or public health nurse to recommend a mild, sugar-free pain reliever.

Avoid ointments that numb the gum unless your dentist recommends them.

Tooth tips for 2-7 years Use a small, pea-sized amount of f luoride toothpaste (at least 1000ppm). Children under the age of seven years should be supervised by an adult when brushing their teeth and should be encouraged to spit out toothpaste and not rinse after brushing.

Diet tips for babies and children Babies are not born with a sweet

MS ETAIN KETT, MPRII Public Affairs & Communications Manager, Dental Health Foundation

tooth and will enjoy home-made baby foods without sugar. If you’re buying baby foods, look out for the ones without sugar. Choose healthy snacks and drinks between meals. Milk and water are the most tooth-friendly drinks. Sweets, chocolates, biscuits, cakes and sugary drinks should only be taken once or twice a week – at most – and limited to mealtimes. Limit fruit juice or fruit smoothies to a small glass, once a day, with a meal and always choose unsweetened.

In the Dental Health Foundation, we believe that healthy teeth are for life! We all want to have healthy teeth, fresh breath and nice smiles as adults and this starts with taking care of children’s teeth from a young age.

The Dental Health Foundation (DHF) has been committed to Oral Health Promotion since 1977. DHF provides evidence based best practice resources to increase awareness among the public by empowering them to make healthier oral and general health lifestyle choices.

Please see dentalhealth.ie for lots of useful resources and publications.

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