My daughter, Evie is 3 and a half years old. This is her (medical) story. Evie was born in June 2009. Right from the beginning it was a rocky start. My milk failed to come in adequately and she failed to gain weight. We had to give her formula or we would be staying in hospital. I battled on trying everything to increase supply and meanwhile, supplementing so that she gained weight. At about 5 weeks, she became VERY unhappy. She cried for almost every waking moment for 3 days. The only thing that stopped her crying that weekend was me breastfeeding her (although I think she was using me more as a dummy) and walking her around outside, talking to her and holding her very upright.

She would not sleep; she could not be put down. She could not be in any position other than directly upright. My husband and I tag teamed for several days straight and were exhausted. I had a doctor’s appointment on the Monday afternoon and she screamed through the wait and the appointment. Even the young GP was rattled by this inconsolable child and sent her for immediate tests and prescribed her Losec. The Losec did make a difference and she settled. She was now a miserable, hard to settle grizzly child, but not screaming all the time. From there we would have several increases bringing a temporary reprieve. I developed inflammation in both hands from carrying her and holding her upright all the time (and probably the stress too).

As I watched Evie, I began to suspect that there was a problem with the formula I was using to supplement. Despite seeing several GPs, my paed, child health nurses, physio, chiro and anything else that offered any glimmer of hope to make my daughter more comfortable, no one suggested dairy could be an issue. I read and read everything I could about reflux and kept coming back to the dairy. We finally approached the GP about going dairy free, rather than increasing medication and she agreed. It was like winning Lotto! She suddenly calmed and her vomiting greatly reduced. She was finally happy and I really enjoyed my time with her. I tried to remove Losec, but one missed dose meant a horrible day the next day, so it was obviously helping and doing its job.

We introduced solids fairly successfully, but a few foods including dairy were a problem. I also felt nervous about introducing some of the more allergenic food. Evie had almost completely stopped vomiting on formula, but breastfeeding she would have bouts of vomiting for days on my milk and I did not know what it was. After a nasty reaction that increased quickly on salmon, she went for allergy testing. She was allergic to dairy, eggs and peanuts. I now know this is a common combination for allergies (salmon wasn’t tested). I changed my diet and she thrived and that was the last time she has ever vomited on food.

My paediatrician and I decided it was probably “allergic reflux” or caused by allergies. It seemed to make sense. We planned weans from her Losec at least every 6 months and whilst she got a little better each time, she failed each one and was miserable off medication (and after a while, so were we). As time went on, our weans became longer; I was determined, but she just got more miserable the longer she was off medication. I had assumed that growing out of her allergies would mean growing out of reflux.

In September 2011, my gorgeous son was born, within weeks he started to show signs of reflux and allergies too and it was a rough start for him. His story is for another time, but it did lead us to seeing a paediatric gastroenterologist who said I needed to see him for my daughter if I couldn’t get her off medication in the next few months.

So we started the next wean. Her sleep became disturbed and she dropped her day sleep, woke every night and took hours to go to sleep. She became extremely fussy with food. She wanted to eat food frozen from the freezer or purees. Meat was out and so was anything hot. She would refuse breakfast and dinner and just grazed through the middle part of the day. She was constantly whining of being hungry, but did not eat much and most food went in the bin. Her weight had dropped from the 50th to 25th percentile. She became totally unreasonable and had massive tantrums over the smallest things. If she happened to nap, she would cry for an hour after it. She became withdrawn in social situations and was extremely clingy and anxious. She had zero resilience and people would ask me what was wrong with her.

Still, many people thought me explaining the reflux was excusing her behaviour and that I needed to change my parenting; her tantrums and bad behaviour was not reflux. People were constantly offering unsolicited parenting advice. It was heartbreaking seeing my beautiful daughter viewed so unfavourably.

We finally saw a paediatric gastroenterologist to get to the bottom of things. If there was nothing wrong with her and she was indeed “putting it on”, I would seek parenting assistance. I needed to know for certain. Too many people had put a lot of doubt in my mind. In fact, I was sure the medication working must have been in my mind. I was wracked with self-doubt and we were all miserable. I felt a failure as a parent. I couldn’t even make my child happy (let alone the behaviour aspect). I was torn between my instincts that it was reflux and giving her the attention, love and comfort she needed or getting tough with her and not tolerating any nonsense.

Well, it was hard to watch her go under anaesthetic and leave her in theatre, but it was the answer we needed. I sat in the consulting room with my sister and the gastro paed came in to tell us that her oesophageal sphincter was still floppy. My sister asked the question for me, “Will she grow out of it?” and he responded that at this age, it was unlikely. I had my answer. Fortunately, biopsies revealed no damage and we were told to stay off medication. I battled on for another few weeks without medication. It was horrendous and things came to a head a few weeks later. I had a falling out with a friend who didn’t understand and spent a trip away criticising my parenting. I needed to get tough.

I went home from the trip early at crisis point and I put her back on medication. Within days she was more reasonable, happy and she started to sing again. I hadn’t even noticed that she no longer sang. It was music to my ears and brought tears to my eyes. I was so excited and relieved to hear it. I went back to my GP. She was very supportive and convinced me this was the best thing for her. She was obviously in pain. I have a wonderful general practice doctor and I am thankful for that every day.

Evie is now doing well and I have learnt to listen to her and trust her and also myself. She is a typical toddler and is so funny. She can be very kind and gentle and is bright and cheeky. I am not sure when, or now even if, her reflux journey will end. At this stage, everyone is starting to consider further testing in the next year and possible surgery; another daunting prospect. But we are getting the assistance we need and with it, we are a healthy and happy little family.

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