1. GASTRO-OESOPHAGEAL REFLUX DISEASE (GORD)
Presentation by Jessica Tovey and Dr Naomi Farragher, with input from Belinda Salter, Glenda Blanch, Trudi Wynn, the Reflux Infants Support Association Inc and members of the RISA Administration Team.
Information primarily sourced from ‘Reflux Reality: A Guide for Families’, and seminar presented by A/Professor Peter Lewindon, Paediatric Gastroenterologist, Royal Children’s Hospital Brisbane (May 2010)
Disclaimer – presentation is by volunteers, not medical professionals employed in the field of gastroenterology. What we know about GORD, we have learned in our experience as a reflux parent
Caution – encourage parents/carers to seek medical advice, as other childhood conditions can present with similar symptoms to GORD
Explanation – when we speak with parents, we are not able to discuss dosages (every child is different, and it’s up to the child’s medical practitioner to make that assessment), and we also are not able to mention individual health or medical professionals on either our parent forums, or through our /phone contacts.

2. Dr Naomi Farragher Mother of Cameron, 19 months
GP Registrar at Lowood Medical Center
Volunteer with RISA Inc 1 year
Parent who survived a child with severe reflux and cows milk protein intolerance

3. Jessica Tovey Mother of Arabella, 4 years and Jordan, 11 months
Currently employed
by CCYPCG, and a Trainee Breastfeeding Counsellor with ABA
Volunteer with RISA Inc for 4 years
Parent to two refluxers

4. What is RISA?
Support/information non-profit community group for those caring for babies and children diagnosed with GOR and GORD
Australia-wide, operating since 1982
Parent forums, member library, newsletters, Facebook site, phone and contacts, coffee meet-ups
Advocacy
Links with health professionals – Joan Breakey, Dr Renee Shilkin, etc
Recently have received an increase in requests for support and information from international families (where organisations such as RISA are not available), and from social workers from the paediatric areas of hospitals, requesting support on behalf of a patient
In 2013, from 15 to 21 April, RISA will join forces with PAGER (USA), Living with Reflux (UK) and Crying Over Spilt Milk (NZ) to recognise Infant Reflux Awareness Week and raise community awareness of GORD

5. What is reflux? Stomach contents enter the oesophagus
Vomiting or ‘silent’
50% infants < 3 months will reflux, 70% between 4 and 6 months, 5% at 12 months
Can be very normal, but if it ‘causes symptoms sufficient enough to interfere with normal life’ (NASPHGAN Guidelines), it becomes GORD
Severity can depend on frequency and composition of the contents rising
At presentation by Associate Professor Dr Peter Lewindon, he made the statement that of all the childhood diseases, medical understanding of GORD in children is still quite limited
Silent reflux just means that they child rarely vomits, though it can still be audible – can be particularly painful as it affects them both on the upward and downward trajectories. Baby/child can present with frequent burping, hiccups, bad (or acid) breath, nasal congestion, and other symptoms (covered later)
- In the majority of cases, an infant’s pain response to reflux is not related to acid. So why are some infants very sensitive to reflux when others aren’t? It’s not so much the act of refluxing that is causing the problem either. For reasons yet unknown, it’s the baby’s response (i.e. how their receptors pick it up and how their brain interprets it) that has the most impact
Also important is how the oesophagus deals with the refluxing of the gastric contents. Research is still being undertaken on this topic, including; clearance (peristaltic activity – how quickly it gets rid of it), buffering (how the saliva flushes away the reflux material), mucosal protection (the ability to protect yourself from acid) and afferent nerve sensitivity (whereby a painful stimulus, in this case a reflux event, creates a sensation in the brain after information about the stimulus travels there via afferent nerve pathways)
- Researchers of infant GORD are yet to fully understand why some infants feel the pain of reflux more than others, but possibilities include visceral hypersensitivity and hyper vigilance

6. Why do infants reflux more?
Body position
Feed composition
Increased number of episodes of TLOSRs (transient lower oesophageal sphincter relaxation)
Shorter oesophagus
Body position – more time horizontal and subject to increased slouching (causes gastric pressure)
Feed composition – higher relative amount of liquid intake (equiv. to adult drinking 7-8 litres of milk per day)
Increased number of episodes of TLOSRs – due to above two reasons. Any ‘dis-ease’ (i.e. stressful condition on the body) increases the number of TLOSRs – incl. active eczema, allergy/intolerance trigger foods, and anecdotally teething, general childhood illnesses, vaccinations, etc
Shorter oesophagus – infant’s is 19-20cm long

7. Symptoms of reflux Irritability/crying/screaming
Vomiting/regurgitating or posseting
Appearing to be in pain
Repeated hiccups and wind
Hoarse voice (damaged vocal cords)
Feeding problems:
refusal to feed or only taking a small amount despite being hungry
comfort feeding- feeding frequently
pulling away and arching their back
crying/screaming during or after feeds
gagging/spluttering
Tooth decay and bad breath
Constipation or irregular movements
Sleeping issues:
catnapping during the day
frequent night waking
easily disturbed from sleep, or restless
Respiratory issues:
Choking
Wheezing/coughing
Recurrent chest infections
Failure to thrive or overweight
Recurrent ear, throat or sinus infections
Congestion, ‘snuffling’ or appearing to have a cold
Mention CDC vs. WHO health charts (for breastfed babies) – can be nearly 25 percentile difference between the charts (re. FTT)
Vomiting (from reflux) on its own isn’t necessarily a cause for concern, if the baby is gaining weight, and there are no other worrying symptoms

8. Possible side effects of GORD
Feeding problems such as feed refusal, difficulty with certain textures or gagging on feeds
Weight loss
Failure to thrive (tubes/tube dependence)
Comfort feeding leading to weight gain
Cyanosis (going blue), life threatening events
Sleep disorders
Breathing issues such as wheezing, stridor, aspiration
Chronic cough
Oesophagitis
Behavioural issues
Sleep disorders
Irritability
Constant vomiting/vomiting blood (fundoplication)
Seizure-like posturing (Sandifer’s syndrome)
Constipation (can worsen the reflux)
Emotional aspects – relationship of carers, treatment of baby/child
The majority of reflux is not associated with oesophagitis. No oesophageal acid burn exists in 99% of cases of reflux, and the terms should not be used interchangeably. The majority of oesophagitis is caused by an allergic response (e.g. EE - Eosinophiliac Esophagitis - swelling of the oesophagus caused by an allergic white blood cell, the eosinophil)
GORD can be cyclic – periods where baby/child appears to be doing well, then symptoms recur
Fundoplication involves wrapping of the upper stomach around the lower oesophagus – child cannot vomit, and prevents the reflux of gastric acid. Previously a Nissen fundo (complete 360 degree wrap) was popular, but more recently, fundos of various degrees are more common, allowing the child to burp a little and potentially retch less
A common question from parents is ‘When will my child grow out of it?”. As each child is different, we’re unable to provide a concrete answer, but generally, the statistics are (when reflux is being treated) roughly 90% by 12 months, another 5% approx. by 2 years, and about 5% may never ‘grow out of it’
Important for parents to be aware that when weaning off PPIs, a tapered approach is recommended to reduce the body ‘acid-rebounding’. This occurs both when stopping suddenly, and also when weaning in general. It happens because Gastrin, a hormone the body produces, sets the body into overdrive creating acid. So there is likely to be a period where the child is ‘worse’ before any improvements are noticed.

9. Some causes of GORD Lower oesophageal sphincter (mal)functioning
Delayed oesophageal clearance
Delayed gastric emptying
Genetic (reflux can be an inherited condition)
Structural issues – e.g. hiatus hernia, pyloric stenosis
Prematurity
Neurological conditions – e.g. Cerebral Palsy
Food allergy/intolerance
Pain response (hypersensitivity)
Tobacco smoke, some foods, certain medications
Final six points are secondary causes
Rare for a baby to have an improperly formed oesophageal sphincter – in about 99% of infants with reflux, their sphincter is physiologically normal – it just relaxes more easily or frequently
Genetic link – while the exact gene hasn’t yet been identified, chromosome 13 has been found to contain the familial link for reflux (found via twin studies, etc)
Prematurity -  immature muscles and abnormal breathing from chronic lung disease. If the lower oesophageal sphincter is weak or underdeveloped, it can remain open when it should be closed, letting the stomach contents flow back up the oesophagus. When an infant or child breathes abnormally because of chronic lung disease, the muscles used for breathing work harder. As these muscles work hard to breathe, they can pull on the muscles near the top of the stomach, stretching the sphincter and causing it to remain open. Affects up to 90% of pre-term infants
Medications – e.g. Aspirin, Ibuprofen

10. Myths about reflux Reflux is just another name for colic
All babies have reflux – it’s no big deal
If the parent/baby are having problems, it’s because you’re an inexperienced/first time parent
Children have to look sick and cry all the time to have reflux (“But she looks so happy/healthy”)
If an infant gains weight well, their reflux is not serious or worth treating
Your child will eat when they are hungry; no child will starve itself
Medications such as Omeprazole (e.g. Losec) must be crushed for a baby
Colic Solved – Dr Bryan Vartabedian
Huge difference between GOR and GORD
Issues with feeding, sleeping, development and behaviour are very stressful and overwhelming – we have members who are new parents, members who are medical and health professionals, members who have many children, etc
Can make it more difficult to seek the help needed – reflux families tend to put a huge amount of effort into keeping their babies/kids as happy and healthy as possible
Severity of reflux isn’t linked to weight – babies can be at either end of the spectrum – those who have better/high weight gains find it harder to be taken seriously, and their treatment can be delayed
May not be true for reflux children – reflux infants/kids can and do stop eating to stop the pain and nausea
The granules in Losec and similar medications are enteric coated. They are broken down in the intestine and must be intact as they pass through the stomach. As a result, crushing and chewing them reduces their effectiveness, as can administering them in breast milk or artificial baby milk (not the right pH levels). Mention compounded vs. tablet forms of medications (pros and cons)
Pros of compounded PPIs – easier to administer. Cons include less effective/stable, generally appear to last for up to 2 weeks only (rather than 4 weeks), can be made differently by different people in different suspensions so lots of room for error, are very expensive, and can contain artificial flavours and colours to make them palatable (some babies/kids can react). Tablet (dissolved) can be administered from a syringe or teaspoon even in young babies. Compounded formulations begin to break down on day 1, but it takes until day 5 when they go below 90%. Once the breakdown falls below 90% (day 6 and beyond) it continues to breakdown. At 4 weeks, there is still some medication in the compound (about 10-15%); however, the part of the medication that is broken down (the degradation products) can now cause excess gas production ("belly bomb"), acid stimulation, and mucousy poop. Studies show that lansoprazole (prevacid) and omeprazole (prilosec) suspensions are actually only stable for approximately 5 days.

11. Case study/s
Mention (very briefly) one or two case studies here

12. Our advice to parents Trust your instincts
Keep a symptoms diary, take photos or videos of baby crying, have a specific list of concerns
GP first – find one who has experience with reflux and is supportive
Seek diagnosis, based on symptoms – could be other issue with similar presentation (e.g. UTI, Pyloric Stenosis, neurological or metabolic disorder, etc.)
Take a support person with you to appointments (baby usually happy at doctors)
Try medications – communicate regularly with GP
Get known at the local medical centre or specialists – be persistent for the sake of your child
“Parenting is instinctual. Even with zero child/baby experience it still comes naturally. If you know something isn't right, trust in that feeling and keep seeking help. Too many parents start doubting themselves on their reflux journey because they can constantly be undermined by people who just don't understand it.” Nicki, RISA Mum
If you have a feeding refuser, ask the child health nurse or doctor to watch you feed them
We can also give parents information on applying for a Health Care Card or Carers Allowance for their child, where eligible

13. Referrals
Paediatrician – be prepared to find one who has experience with GORD
Paediatric Gastroenterologist – specialises in digestive system disorders
Paediatric Allergist
Feeding Therapy Clinicians (e.g. Speech Pathologist, Occupational Therapist)
Specialist Dietitian
Social Workers
Counselling

14. Other management techniques
Baby upright for 30 mins after feeds
Use a baby sling
Avoid slumping (e.g. baby capsules) that put pressure on the stomach
Elevate the head whenever lying down
Consider using a dummy
Avoid vigorous movements
Avoid tummy time after a feed
Change nappy before a feed (roll baby to side)
Avoid any tight clothing around the waist
Avoid exposure to smoke or dust
Rocking in a pram or rocker can be helpful
Use distraction – go outside, put music on, etc
Use a CD or white noise to prevent baby waking
Contact a support organisation for emotional support
Get out socially – find an understanding group
Lower expectations of what you can achieve (e.g. household tasks)
- It is known that prone positioning (i.e. lying on the stomach) is one of the most effective ways to control reflux (this position causes the stomach to fall forward, blocking the gastric contents from exiting up the oesophagus). However, due to SIDS guidelines, this is not able to be recommended
Currently, at RCH and also internationally, position control therapy (PCT) studies are underway. So far, the studies have proven that in infants under 6 months of age, lying them on their left side (left lateral position) has benefits almost equal to lying them prone. Laying them on their right lateral side is not nearly as effective. The frequency of TLOSRs and the severity of reflux both occur much less when an infant is laid on their left side. In infants over 6 months of age, this would still apply, however by that age they often roll over themselves so it is difficult to keep them in position. This therapy is recommended for a few hours following feeding, in cases where an infant is not upright
- Reflux babies who are terrible sleepers during the day, can in some situations sleep fairly well at night, because they are exhausted from crying/cat napping during the day
- One of the reasons for disturbed sleep (e.g. one sleep cyclic only at a time, for example) can be that when asleep, people swallow less, and when there is less saliva, which contains bicarbonate to help neutralise acid, acid remains in the oesophagus longer

15. Feeding a refluxer Keep baby upright as much as possible
Avoid overfeeding - if the baby vomits, wait until the next feeding rather than feeding them again
Experiment with feeding amounts and times
Experiment with positioning and timing
For a refuser, try feeding while just waking up or in a quiet, dark room.
Try thickening the feed (Infant Gaviscon or Karicare thickener) after speaking to a medical professional
Bottle-fed - try AR (anti-reflux) formula, or a hypoallergenic/soy one (after speaking to a medical professional)
Mention recent changes to prescriptions of Neocate and similar - As of 1 July 2012, the Pharmaceutical Benefits Advisory Committee (who administer the Pharmaceutical Benefits Scheme or PBS), have made changes to the way amino acid-based formulas like Neocate or Elecare can be prescribed for children under 24 months. Theoretically, now only paediatric gastroenterologists, a specialist allergist or clinical immunologist can now write these prescriptions.
HOWEVER, paediatricians and General Practitioners can still prescribe these formulae “in consultation with” any of the specialists above. That can take the form of a phone call or between the GP or paediatrician and the specialist and the patient must also have an appointment to see the specialist. They have also made allowances for waiting lists to see specialists.
A new formula is coming onto the market in November called Karicare Allergeez. It will be available OTC, same formula as Pepti Junior minus one ingredient for malabsorbtion.
Thickening formulas doesn’t make any difference to reflux symptoms, but may make some difference to the amount that comes back – can cause constipation or diarrheoa, may increase reflux (stays in the stomach longer, so more chance of being refluxed), and can cause increased coughing during feeding. Can cause increased oesophagitis as the thickened fluid stays in the oesophagus longer when refluxed so if not on a PPI can cause more burning.

16. Introducing solids early?
Some professionals will recommend introducing solids at 3 months of age. The theory behind this is thicker foods will stay in the stomach easier and decrease the reflux
Current research shows that the gut of a baby at 3 months of age is not mature enough to digest food and introducing at this early age can increase the risk of food allergies and intolerance
Recommendations are between 4-6 months of age (6 months if breastfeeding), when the baby shows signs of being ready for food
Many reflux parents have found that early introduction of solids worsens the reflux

17. Allergies and sensitivities
A lot of refluxers have food intolerances
Cows milk protein intolerance/allergy is one of the most common – approx % of reflux babies/kids (note: NOT lactose intolerance)
There is a cross reaction with soy for over 50% of babies with a cows milk protein intolerence/allergy.
Introduction of solids can be difficult in sensitive children and may need help from health professionals
Elimination diets for breastfeeding mothers may be required
Having an infant with reflux and/or intolerances does not mean you have to stop breastfeeding
Breastmilk is more easily digested and empties more rapidly from the stomach than artificial baby milk, so there’s less time for it to reflux back up
Breastfed infants have much shorter reflux episodes during sleep
Breastmilk causes less problems with aspiration than artificial baby milks
Regurgitated breastmilk may not be as irritating to the oesophagus, and contains substances to help repair the lining of the oesophagus
Mums who are breastfeeding may need to seek support from LC, ABA, etc, to manage feeding refusal or other issues related to reflux and allergies
Important difference between lactose intolerance and CMPI/CMPA. Lactose-free artificial baby milks won’t help a baby who has CMPI/CMPA as they usually still contain dairy proteins. Mention Joy Anderson article – good description of difference between primary lactose intolerance, secondary lactose intolerance, lactose overload, and CMPI/CMPA. Also mention that parents need a trial of soy formula for one week to fulfil guidelines for changing to prescription formula such as Neocate.

18. Feelings parents may experience
“This is not what I imagined it would be like” (mourning the loss of their parenting dreams)
“I am a failure as a mother, I am not cut out for this” (feeling like you are not coping but should be)
“Everyone else seems to like their baby more than I like mine” (no matter how much you love your baby, not feeling happy around them is not uncommon)
“I just want to run away”
“Everyone thinks I am a bad parent” (the feeling of being judged by other parents, family members, friends and people in the medical profession)
“Everything is a blur” (sleep deprivation may put a reflux parent into auto pilot)
“This will never end” (feeling positive about the situation can be hard)
“My baby has been in pain everyday of his life” (it is devastating to a parent to see their child in pain and feel helpless to do anything about it)

19. Thank you for your time Any questions?
‘Reflux Reality: A Guide for Families’ can be purchased from Michelle Anderson Publishing, by ing RISA on or through various bookstores and online book sellers

20. Thank you for your time Any questions?

21. Some stats currently given to doctors
Prognosis of reflux in untreated infants - 60% symptom free by 18 months of age - 30% had troublesome symptoms into childhood - 5% developed oesophageal strictures - 5% died from pneumonia or inanition • Prognosis in treated infants - 50% require no further therapy by 10 months of age - Another 30% improve by 18 months - 17% have ongoing symptoms which respond to anti reflux surgery - 2% have persisting symptoms beyond 24 months

22. MEDICATIONS Type Examples Use Preparation Special Notes Side Effects
Antacids
Mylanta
Gastrogel
Calcium Carbonate
Short term relief of intermittent symptoms of reflux
Liquid or chewable tablet
Can interfere with the absorption of some medications
Constipation or diarrhoea
Thickening Agent
Infant Gaviscon,
KARICARE thickener
Reduce regurgitation in infants; short term relief
Powder sachet
Do not use with other thickening agents or thickened formula
Can worsen symptoms
Histamine-2 Receptor Antagonist
(H2RA)
Ranitidine- Zantac
Cimetidine- Tagamet
Regular use; suppress acid production
Syrup, effervescent tablet; or tablet
Weight based medication
Headache, nausea, diarrhoea
Proton Pump Inhibitor (PPI)
Omeprazole- Losec
Lansoprazole- Zoton
Esomeprazole- Nexium
Regular use: stops acid production
Tablet/capsule or suspension; injection
Pellets are enteric coated; and must not be chewed or crushed
(more effective than H2RAs)
Constipation, diarrhoea, abdominal pain, nausea, vomiting, headache
Prokinetic Agents Motility medication
Domperidone
Erythromycin
Metoclopramid
Motilium
Regular use: help food move through the gastro-intestinal tract quicker
Tablet, liquid
Best administered minutes before a feed.
Should not be given at the same time as other medications
Nausea, vomiting, diarrhoea, abdominal pain, irritability