Our Reflux Journey | Part One


Our Reflux Journey autistic and pregnant autistic mum life sharing pregnancy and parenting experiences from the autism spectrum

What is Reflux?


Reflux occurs when the oesophagus is underdeveloped and allows stomach contents to flow back up into the mouth and throat. There are two types, Reflux and Silent Reflux. Reflux tends to manifest as significant vomiting whereas silent reflux tends to be where the stomach contents flow up to the mouth and irritate the area. 

Our Experience.


Iris was a very noisy sleeper. She constantly grunted and wheezed. Being first time parents we had no idea whether this was normal and assumed it was. Over the first few weeks of Iris’ life we noticed her pulling her legs up, crying and seeming irritable. She sneezed a lot, choked on nothing and pushed her tongue out in a way that made it seem like it was too big for her mouth. We assumed it was wind and embarked on a journey of Dentinox, Infacol, Gripe Water etc. Everyone had some advice to offer and when I questioned whether it was actually wind I got a patronizing nod of the head that said ‘Oh, poor first timer!’ (First parenting lesson learned, you know your child. Listen to your instinct).

Having exhausted all the wind relief options I started to research online and I found an abundance of information that matched up with the symptoms Iris was having. There was no question in my mind that she was suffering from silent reflux. We switched her onto a milk that was supposed to help ease her symptoms but that replaced one problem with another. She suffered horrendous constipation on the new milk which caused her more pain and suffering so we switched back to her previous milk and were back to square one so we headed to the gp surgery for help but all we got was that same old patronizing head tilt and a diagnosis of colic. I felt embarrassed but I knew my daughter and something wasn’t right.

I returned to the internet to find out what treatment others were using and found that people were suggesting Carobel to thicken the milk. I was too embarrassed to return to the doctors so I found a pharmacy that I could order from and began using a small amount in Iris’ milk and noticed results quite rapidly. I mentioned to my health visitor that we’d had a problem that had been dismissed by a gp but we’d solved it ourselves and she was less than impressed. She ordered that I stop the carobel immediately and take Iris back to the gp. She put the fear of god into me and convinced me that in my efforts to help my child I had inadvertently damaged her.  

Thankfully we got a gp that listened and prescribed Gaviscon Infant in every bottle. This essentially did what the Carobel did and thickened the milk enough to prevent it from being regurgitated back into Iris’s throat and causing her discomfort. All this had happened by the time she was 8 weeks old. By the time she was 12 weeks old we’d been referred to a paediatrician as Iris had developed agonising stomach pains. She would scream in a way that was unlike any other cry we’d heard. It was heart breaking. Thankfully the paediatrician was very aware of reflux and agree that the symptoms we’d described were synonymous with those of silent reflux. He prescribed ranitidine to use alongside the Gaviscon and gave us an open appointment for the next 6 months should we need it. It finally felt like things were under control….

Has your child suffered reflux? What were your experiences of diagnosis and treatment?
Our Reflux Journey autistic and pregnant autistic mum life sharing pregnancy and parenting experiences from the autism spectrum



2 comments:

  1. Both my boys had silent reflux - Toby was 6 weeks old before we got a diagnosis and medication, and he was on Ranitidine until he was two and a half. Gabe was the same and he was on Gaviscon and Ranitidine by the time he was 10 days old. At 5 months we added omeprazole and he was on medication until he was almost two and a half as well. It's horrible but it can be well controlled with meds, and at 5 and 3 both my boys are absolutely fine with no lasting effects from their reflux. I hope Iris is doing better now.

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    1. Thank you so much for your comment- it's exactly what I needed to read. I've been worrying because Iris has been on the meds for so long and everything I read said she should be better by 1. We've just tried coming off her meds and it's been a hellish week. We've started the meds back up and she's much better already x

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