Living with a reflux baby

At four months old Toby takes 1ml of medicine in a syringe three times a day. He also has Infant Gaviscon added to every bottle of milk as well as Dentinox Colic Drops (although I’m not entirely sure that they really do anything!). I don’t like having to give him medication so regularly but for now it is just something we have to live with. I know that we are very fortunate that Toby’s illness is in no way life threatening and, if we are lucky, he should grow out of it fairly soon. That said, gastric reflux has not made the first few months of my little boy’s life as smooth sailing as it could have been.  Before Toby was diagnosed I found a lot of really useful information online and from reading about other people’s experiences so I hope that by sharing our reflux story (so far) we might be able to help another baby who is struggling with the same problems.

We first thought something might be wrong when Toby was just a week or two old. As I have already written we had some trouble breastfeeding in the beginning and a lot of that was trying to get Toby to latch on properly. Instead of rooting and turning towards the breast he would actively turn away. I think the difficulties we had were a big contributing factor to why we ended up moving to formula feeding full time. Of course it’s only with hindsight that I can link these difficulties to reflux.

The second major indicator that something wasn’t right were the noises that Toby would make when he was lying in his crib, especially during the night. He would make all sorts of grunting and choking noises, keeping both himself and us awake. Sometimes he would be asleep but still making these noises. It was horrible hearing my baby sounding so distressed even though it didn’t actually seem to be bothering him that much. I mentioned it to our health visitor but she just dismissed it as ‘babies are just noisy’. Toby was still sleeping in our room at this point and I even resorted to wearing earplugs to try and get some sleep!

When Toby was about a month old I turned to Google to see what could be causing all these noises he was making. One of the possibilities that came up was reflux.  I didn’t really know much about reflux; a friend’s daughter had suffered when she was a baby and remember her having to have Gaviscon in her milk but that was about the extent of my knowledge. It was also at this point that Toby started being sick a lot more. This coincided with our move to full time formula feeding meaning he was managing to eat a bit more in one sitting. This vomiting was something which was also dismissed as normal by the health visitor. I know babies often bring up some milk after feeding but Toby was bringing up virtually full feeds, sometimes straight away, sometimes half an hour or an hour later. I would put him down to sleep and then find when I checked on him that he had been sick over his shoulder – his clothes, hair and sheets would be soaked. And I was terrified that he wouldn’t turn his head and would end up choking. His vomiting was so forceful that on one memorable occasion I sat him up to wind him and he was sick all the way up my dressing gown sleeve, managing to get it up past my elbow!

The more I read about reflux, the more convinced I was that I had found the cause of Toby’s symptoms. Along with the vomiting and the noises, there were also continued difficulties feeding even after we had moved to bottles full time. Reflux is really another name for heartburn. It is quite common in babies as the muscle at the top of the stomach can be underdeveloped making it very easy for the contents to come back up into the babies throat and the acid from the stomach can be very painful for them. During and after feeding Toby would arch his back and scream in pain. It was just heartbreaking to watch. Even very young babies can quickly learn to associate feeding with the pain of reflux, but equally they know that feeding can help to alleviate the pain temporarily as the stomach contents are pushed back down. What this led to was a cycle of feeding on and off all day. Toby would take an ounce or two of formula then refuse to drink any more as he knew it would hurt him but then he would be hungry again half an hour later and this went on day and night. It was exhausting for both of us.

From reading online I found quite a lot of tips of things we could do to try and help Toby. We tried to feed him in a more upright position, keep him upright after feeding (it was recommended to keep him upright for half an hour, which is fine during the day but not so practical at three o’clock in the morning!) and to tilt his crib so gravity would help keep the milk down. We tried all these ideas. We used books to raise the head of his crib. In fact at one stage it was at such a steep angle that we had to tuck his blanket really tightly under his arms to stop him sliding down the crib and ending up in a heap at the bottom!

However, after a week or so of trying anything we could think of without seeing any improvement I took Toby to see our GP. I explained Toby’s symptoms and, after checking it was nothing more serious, the doctor agreed it was reflux. I suppose it is quite difficult to diagnose reflux accurately in babies. Certainly when we were at the doctor Toby was happy and showed no sign of any discomfort. The doctor just had to go on what I told him. Anyway, the first step in treating reflux in babies is Infant Gaviscon. For formula fed babies this is added to the milk (it can be used for breastfed babies too but administering it can be a lot more tricky). Unlike the adult version Infant Gaviscon contains only a mild antacid. Its main function is to thicken the milk, making it easier for a baby to keep down and so reduce the symptoms that way.

So we started with the Gaviscon and we did see something of an improvement in Toby. He stopped being sick pretty much completely and he did seem a bit more comfortable but the night time noises and the back arching were still there. After a week I took Toby back to the doctor, this time armed with a video to show him exactly what was going on. I knew there were other medications that could be prescribed that I thought might help Toby further. But as Toby had stopped being sick and was still gaining weight the doctor just wanted us to continue with the Gaviscon.

So we carried on for another week or two. Toby was definitely better than he had been but his feeding routine hadn’t improved. Feeding was still going on through most of the day (and night) making it really hard to go anywhere or do anything. We were going to just persevere with the Gaviscon but one day I was browsing in our local charity shop when a book called The Sensational Baby Sleep Plan caught my eye. I’ve mentioned this book by Alison Scott-Wright in another post but the reason I bought it was because it had a whole chapter about reflux. The author made the very good point that we couldn’t expect Toby to sleep well until his reflux was under control. In the book there is a list over four pages long of symptoms that can be associated with reflux. Of course in isolation some of these things could just be normal baby behaviour but when a baby has several of the symptoms and isn’t able to sleep and feed comfortably then that can indicate reflux. I’m not going to go into the whole list but here a few of the things that Toby was doing:

• Frequent hiccups – also babies who have frequent hiccups in the womb, which Toby did, often go on to develop reflux
• Arching the back and neck
• Body goes rigid and stiff, it always seems as if the baby is trying to stand up on you
• Displaying stress-related behaviour as a reaction to pain or discomfort – head-thrashing, rubbing together heels and/or feet
• Appears to fall asleep after a few minutes’ feeding and is impossible to wake to continue with the feed
• Cries when laid horizontal
• Wants to be constantly held
• Having excess mucus and seeming to have a constant cold
• Small amounts of vomit produced all the time – we would often see a little bit of milk come up into Toby’s mouth which he would then swallow back down, causing burning from the stomach acid both on the way up and the way down again.

So you can see, this is quite a diverse list of symptoms but when I read it and so many of them applied to Toby I knew his reflux still wasn’t under control and so we headed back to see the doctor again. This time we saw a trainee GP so I just went in, explained Toby’s symptoms hadn’t improved and asked to be prescribed ranitidine, an antacid that I knew was used to treat reflux in babies. Cue much confusion from the trainee as she checked her reference books – ranitidine isn’t licensed for babies even though it is widely prescribed so she was struggling to work out the correct dosage. As it turned out is was a good job we have an observant and thorough pharmacist because she actually prescribed over ten times the correct dose! Luckily it was all sorted out and Toby started on his new medicine. And there was an almost immediate improvement. Within a week most of his symptoms had gone, he was feeding better and sleeping better. Within a couple of weeks we had him feeding roughly every three hours and sleeping through the night. It was amazing.

Since then we have had to increase the amount of ranitidine Toby was getting – the dosage is calculated on the babies weight so as they get bigger the dosage can need recalculating if symptoms start to reappear, Which brings us to today. Toby is largely free of the symptoms of reflux. Babies do usually grow out of it at some point but the only way to really tell is to reduce or remove the medication and see what happens. We have tried reducing his Gaviscon recently but he just starts being sick again. However, yesterday I forgot to give Toby his lunchtime ranitidine and he was absolutely fine all afternoon. So today I didn’t give him that dose again and still no problems. So we are going to keep on with his morning and evening doses for now and see how it goes and if all is well then maybe we can start reducing those doses too.

If I had any advice for parents of baby suffering from reflux, or who they think might have reflux it would be to see your doctor as soon as you can and if the medication you are given doesn’t seem to be working then go back until you get something that does. I know we were lucky in a way that the ranitidine worked, but if it hadn’t I know there are other medications we could have tried. If I could go back I would have gone to the doctor much sooner and maybe tried to get the ranitidine earlier so then Toby would have felt better quicker. But at least he’s doing OK now and I’m sure there won’t be any lasting damage caused by his difficult early weeks.

Reflux does seem to be more common now but I wonder if that is because parents can do more research themselves online and so are more aware of it, and therefore it is being diagnosed more often rather than dismissed as colic or just a ‘sicky baby’. Did your baby have reflux? Did you find it easy to get a diagnosis and appropriate treatment or was it a bit of a struggle? I would love to hear about the experiences of other parents in a similar situation to us – feel free to leave your comments.