‘Life on the Reflux Rollercoaster’

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‘Life on the Reflux Rollercoaster’ by Beverley Ward.

It’s 10pm on a typical night and I’m on the Little Refluxers forum – again. Before my baby Douglas was born, I’d never been on a forum; now the virtual world of reflux mums is sometimes the only place I feel understood.
A new message has come in from ‘Angie’, mother to a 7 week old silent refluxer. “Everyone thinks I’m over-reacting,” she says. I pen a long-winded and careful reply but the gist of it is, “You are not crazy!
I spent the first 6 months of my baby’s life fending off people who clearly thought I was somewhere on the crazy spectrum. From health visitors who wanted me on anti-depressants to friends who thought I was paranoid, I felt like I had to fight constantly to get people to understand that there was something wrong with my beautiful baby boy.
From the day he was born, he couldn’t sleep. I’d lay him down contentedly in his carrycot only to have him wake up crying twenty minutes later. At night he slept fitfully, glued to my nipple, comfort feeding his way through the night. When he was feeding he’d gulp and guzzle, choke, gag and cry. He was my second child so thankfully I had something to compare it to but nevertheless breastfeeding counsellors, midwives and health visitors all observed his latch and said he was fine. They suggested Infacol and gripe water for his wind. He didn’t improve. His weight gain was slow. My nipples were raw. We were all exhausted. And then he caught a cold.
I’d been to the doctors when my daughter Edie had colds and knew by now that there was really no point in taking a young baby to the GP with a cold so I kept him at home. He was full of mucous and feeding him lying down (the only way I got any rest) was difficult. A couple of times he choked at early morning feeds, was sick copiously and screamed for a period.
I still didn’t go to the GP. It was one job too many in a busy day juggling young children. Then one day he just started screaming out of the blue. I thought he had wind so I picked him up to try to burp him. It was the worst moment of my life. His eyes rolled back, his skin turned grey and he went limp in my arms: he’d stopped breathing. I shook him and screamed his name. He opened his blue eyes, stared vacantly at me for a second, then shut them again. Something unthinkable was happening: my baby seemed to be dying in my arms. I grabbed for my phone, still shaking the baby with my toddler hanging off my leg asking if she could watch Dora. I dialled 999. Exactly 3 minutes later paramedics were at my door followed closely by an ambulance and my concerned neighbours. He came round and we were admitted to hospital. He’d experienced an apnoea attack or something they call an Apparent Life Threatening Event.
He had six more of these ALTEs whilst in hospital with a diagnosis of bronchiolitis. Unable to breastfeed he was given expressed milk through a tube in his nose. The nurses would give him his feed and then leave the room. A few minutes later I would see him turn blue and floppy and sound the alarm. I now know that he was experiencing silent reflux – when the contents of the stomach regurgitate back into the oesophagus without the baby vomiting.
In his case, in combination with bronchiolitis, they were blocking his airways. It took another three months though before he was diagnosed with reflux.
The nightmare continued on our release from hospital only this time I really was paranoid. He would choke and turn blue in the night and scream after feeds. I kept going back to the doctors with my theories. I asked if he had further recurrences of bronchiolitis – no. Or a tongue-tie – allegedly, no, although it turns out now that he has.
Unless he was feeding or trying to sleep he was a happy, smiley, bonny baby. No one could really believe there was anything wrong with him unless they happened to witness him during a bad feed, pulling away from the breast, arching his back with tears rolling down his chubby cheeks. He fed and fed as if he was trying to push food through his body. I frequently said that I felt like I was poisoning him with every feed. It turns out I was right.
After one particularly bad choking episode at around eight weeks, the GP sent us to the Acute Assessment Unit. A paediatrician observed him crying after a feed and declared him “still hungry”. At the same time he recognised that hour-long feeds were not normal for a baby of his age. He tried to refer us to the hospital’s breastfeeding expert but it turned out they didn’t have one any more. So we left AAU no further on but with a horrific bout of gastroenteritis contracted at the hospital.
The problems continued and when Douglas was around fourteen weeks old I begged my GP to refer me to a gastroenterologist. We spent another day in the Acute Assessment Unit and this time a registrar told me that he was probably cow’s milk protein intolerant, which would explain the obvious tummy and bowel issues and the fact that his poo had always been green and stringy (apparently normal breastfed poo according to the GP!) I duly cut dairy and soya out of my diet but he continued to get worse. By now he was only able to sleep by breastfeeding constantly all night. He had milk pouring out of his nose and the sheets were soaked. He was sobbing when I fed him and he had a constant wheeze.
At 4 months we finally saw a gastroenterologist who diagnosed silent reflux. He prescribed the H2 receptor, ranitidine. Douglas didn’t improve. We had a fast track appointment back into the system and were given a PPI (Proton Pump Inhibitor) omeperazole which I now know is the wonder drug for most reflux babies. But Douglas continued to get worse. I phoned my GP again asking if there was anything else I could do, as I couldn’t stand to see my baby in such pain. “He might not be in pain,” he said. “He might just need a nappy change”!! So, I videoed Douglas feeding, arranged childcare for my 3 year old and camped out in A & E. A paediatrician took one look at my film and returned with a higher dose of omeperazole. But Douglas still failed to improve.
Meanwhile, I was feeling crazier than ever. I had a diagnosis and yet people still didn’t seem to understand. Every mum I spoke to seemed to have a baby with reflux or know someone who had. They spoke of Gaviscon and Colief and how it would all resolve with a bit of baby rice. Was I making a mountain out of molehill? I now know that the term reflux is a catchall word for babies who have a huge spectrum of symptoms. It seems to have replaced colic as a diagnosis for any baby who cries a lot or is unsettled at feeds. It also covers “the happy spitter” who possets (or even vomits) after a feed and then grins cheerfully.
Gradually I learned that whilst basic reflux really is nothing much to worry about (as the doctors kept reassuring me), at the severe end of the spectrum it can cause enormous damage to the oesophagus which is literally burnt with acid, not to mention the potentially life-threatening apnoea attacks and the terrible toll of sleep deprivation on parents. It can also have implications for the whole ear, nose and throat region. I learned that Douglas’ condition was more accurately described as Gastro Oesophageal Reflux DISEASE (or GORD) and I got better over time at stressing the word ‘disease’. I still had to deal with the unhelpful advice and insensitive comments at every turn though: “Ooh, someone’s learned how to get attention,” said the hospital pharmacist whilst watching me attempt to feed my screaming baby.
By now I was a regular on the forum and spent my days and nights trawling the web for answers. I was starting to be convinced that Douglas was reacting to foods other than dairy and soya that were coming through my breast milk. I came across the website of Mike Thomson (a specialist paediatric gastroenterologist) who works privately in Sheffield and London and also for the NHS. I asked for a private appointment but in the end he squeezed me into an overbooked NHS clinic. We had the first appointment of the day and were shown into an office. I took one look at the man across the desk and said, “You’re not Mike Thomson, are you?” The consultant assured me that he and Mike Thomson worked closely together. He then assured me that Douglas could not be reacting to breast milk (the same advice as that given to me by the hospital dietician I was under) and that he needed to be admitted for tests. I walked away upset by this news and upset that I hadn’t seen the man I came to see. I asked reception if I could see Mike Thomson and I was duly shown into his office. He listened briefly to my story and told me in no uncertain terms that Douglas was reacting to breast milk and that I must stop breastfeeding immediately and go onto Neocate (a manmade formula). So much for working closely together.
So I began the heart-rending process of ceasing to breastfeed and getting him to drink formula that smells of potato peelings. Even this wasn’t the end of the story for us though. On Neocate, Douglas continued to get worse, waking 15 times a night screaming with abdominal pain.
Concerned that his problems weren’t resolving quickly enough, the consultant booked the tests after all. By the time the tests came round he’d settled down quite a lot but he was still waking fairly regularly through the night in pain. He had an endoscopy, colonoscopy and PH study to look at his insides and the extent of his reflux. The cameras showed that his colon was lined with tiny ulcers; (perhaps he was in pain after all, huh?). When the biopsies came back they revealed that he had high concentrations of eosinophils (allergic cells) in his intestines giving him a diagnosis of Eosinophilic Gastro Intestinal Disorders (specifically eosinophilic colitis) or allergies.
On anti-histamines he slept through for the first time ever and these days (at 14 months old) he’s doing really well. So far he lives on diet of Neocate, butternut squash and potato. He’s back on the 98th centile and, although he’s still wheezy, he’s the happiest boy alive. But every week or so we have to try a new food and the problems start again – he won’t settle for a nap, he wakes up coughing and writhing in pain, the old reflux acid breath is back and the nappies are stringy again.
When he has a fever we struggle to medicate him as he has violent reactions to basic medicines such as Calpol. I still trawl the internet trying to work out what has caused these problems.
Some people theorise that it’s caused by the mother or baby taking antibiotics (I took a lot of antibiotics for recurrent infections during pregnancy), others by a breastfeeding mother having a ‘leaky gut’, which somehow allows food proteins to pass through breast milk causing an immune reaction from the baby’s immature system.
One lactation consultant argues that it could all be down to undiagnosed tongue-tie. The medics generally refute these theories but one of them did say that it could have been kicked off by the bout of gastroenteritis he contracted in their hospital which would certainly be ironic. Not knowing the truth still drives me mad and other people and their comments still rile me too: “Perhaps he just needs sleep training,” “All babies can be like that,” “He looks really well.”

I don’t know what the future holds for Douglas. Maybe he will be like other EGID children I know of who live on a diet of six safe foods or perhaps this is as good as it gets for Douglas. Medics are still cautiously optimistic that he’ll outgrow the disease but their predictions about when this will happen are constantly being pushed back. I hope that one day he’ll be able to eat like a normal child by the time he starts school. I’m not looking forward to the birthday parties where he can’t eat cake and crisps or all the ups and downs of food reactions along the way. But I love my boy with all my heart and I wouldn’t swap him for the world. And at least now we have a big diagnosis with a big name people have (mostly) stopped thinking I’m crazy.

For more information and support on Gastro Oesophageal Reflux Disease see:
For information on EGID and food allergies see:
by Beverley Ward
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About Author

Jonathan

As well as being one of the founding members of refluxSUPPORT...Jonathan is a Board Member and trustee of Living with Reflux – the only UK Charity for infants with reflux related conditions.He is also a stakeholder in the National Institute for Health and Care Excellence (NICE) – Gastro-oesophageal reflux in children and young people.He has three daughters of which the eldest is now seventeen. Two suffered from severe reflux.