GASTRO-OESOPHAGEAL REFLUX DISEASE (GORD)

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)

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 email contacts, coffee meet-ups • Advocacy

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

6. Why do infants reflux more? • Body position • Feed composition • Increased number of episodes of TLOSRs (transient lower oesophageal sphincter relaxation) • Shorter oesophagus

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

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

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

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

11. Case study/s

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

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)

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)

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. 40-50% 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

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 emailing RISA on info@reflux.org.au, or through various bookstores and online book sellers

20. Thank you for your timeAny questions?