Alexis’s story

In hindsight, My daughter wasn’t right from the day she was born. She was the baby crying all night while all the other babies (and mums!) slept. Things didn’t really improve when we came home from hospital but really came to a head when she was 3 weeks old and screamed all night for over 12 hours. She was inconsolable and there was nothing we could do to comfort her. I took her to the doctors who suspected reflux and prescribed gaviscon. This did nothing but make her constipated and even more unhappy and uncomfortable.

I took her back to the doctor who decided that as the gaviscon hadn’t worked she has colic not reflux. For the next few weeks I tried every anti-colic remedy and bottles on the market. I kept taking her back to the doctors on an almost weekly basis and kept getting told it was colic and to try this or that. We were then told to try anti reflux milk, lactose free milk, comfort milk but nothing worked. One doctor even asked if she was my first child (in a very patronising manner) and told me I just had a fussy baby but I knew she wasn’t right. She wasn’t just unsettled – she would scream for hours and couldn’t be comforted, feeding was incredibly hard as she would arch her back, cry and fight being fed and then was sick after most feeds. She couldn’t be put down and barely slept. Every minute with my baby crying felt like an hour, every hour like a week and I felt helpless and useless as there didn’t seem to be anything I could do. I was exhausted and frustrated.

Most days I didn’t manage to get dressed out of my pyjamas and my house was constantly a mess. Reflux even affected how we played with her. It had made her very over sensitive so a sudden movement or loud noise would upset her. At 12 weeks I insisted the doctors refer her to the paediatrician as I had tried everything and nothing had worked and now they saying there was nothing more they could do. Even then I had to chase up the referral and appointment myself. After seeing the paediatrician and explaining everything we had tried, Alexis was given a diagnosis of reflux and she was prescribed 2 different medications.

After a few more weeks trying different milks and medications, at 17 weeks she was on the right combination of meds and milk and seemed to finally be more settled. However, with reflux anything and everything can trigger it off – teething, illness, certain foods so she can still have bad days and nights. Even things like her starting to crawl made her start being sick again due to the position she’s in.

For a lot of people, weaning is the solution to their babies reflux – for us it just bought on a new set of challenges, not only due to her intolerances but also because her reflux has caused her to have a sensitive gag reflux and with it some food/feeding aversions. Having a child with reflux has certainly affected me in many ways. I haven’t felt confident enough to take her to any groups in case she started crying and I couldn’t stop her as I felt people wouldn’t understand and would judge me. I felt like a mess and I looked a mess and I didn’t feel like anyone would understand. I felt like everywhere I went I had to explain she had reflux just so they didn’t think the screaming was down to my rubbish parenting skills

There were even times when we were visiting my own family and I had a panic attack as I knew her worst time of day was approaching and I just wanted to get away before she started crying as I didn’t want people to see her like that. I’ve even abandoned a trolley full of shopping as she started screaming and wouldn’t stop and I just panicked! I’ve also felt extremely guilty that my eldest daughter has had so much less of my time and attention and I constantly worry about the effect this will have on her. It has also affected relationships with friends. As I couldn’t get out to meet up with people and was often too busy and distracted to reply to texts, they just stopped trying and are no longer in touch. I have felt very isolated and alone.

Living with Reflux has been a lifeline for me. To know that I wasn’t alone and that others were going through it too and to have people to talk to really has been an amazing help and has got me through many bad days, supported me through them and been there to celebrate to good days and the achievements (however small) too!