The Awfulness of Reflux in Babies - Part Four

So, now that I've shared our story of J's reflux I thought it would be a good idea to put together a post with my top tips for dealing with  it. Obviously I am not a doctor, these are just tips that worked with us and J's reflux:

1) Prop up your crib with blocks/books or use a wedge pillow under the mattress combined with a sleep positioner. Now that Josh is medicated, we decided to try and take away the wedge pillow and sleep positioner as we didn't think he would need them. This was a big mistake, within minutes he was starting to arch his back in pain. They really do make a huge difference.

2) Keep your baby sitting upright for at least 30 minutes after each feed. Longer if you can (i.e. if it's not the middle of the night). I also keep J upright as much as possible during the day. The Rock n Play I mentioned in this post is just great for giving me a break so he's not in my arms. Another option is to get a sling and carry the baby around that way during the day. I'm a fan of babywearing and have a Moby wrap that I use to carry J.

3) If you can get them to use a dummy/soother/dodie/pacifier - whatever you want to call them do it! I know some parents are against them but it is now actually recommended that they are used to help prevent SIDS. They are a great help for refluxy (and also colicky) babies to encourage them to swallow. It is also a great comfort. Luckily J loves his, I don't know what we'd do without it. Refluxy babies often gag themselves with their own fists (which J loves doing) and I'd much prefer he used a sterilised dummy if he needs the comfort.

4) Small feeds more often seem to work better. As J is pretty much exclusively breastfed and I feed on demand this can be hard to control but often refluxy babies feed more often naturally as the milk soothes their poor burned throats.

5) There is a lot of advice online about foods to avoid, most of it conflicting, in my opinion. Dairy and chocolate feature heavily though. I just couldn't face giving these up though, after being so sick during pregnancy it is heaven to be able to eat normally again. I did give up spicy foods though as that was a definite aggravator. If you have more self control than I do this could be an option for you if you are breastfeeding. I know of a mother whose baby has terrible reflux and unlike J, vomits regularly. She gave up dairy and said it made a huge difference to her baby. I could actually physically see the difference in her baby from one week to the next so it can work if your baby is slightly lactose intolerant.

If you are formula feeding try one of the specific formulas for reflux like Aptamil Reflux or SMA Staydown. Some refluxy babies are also lactose intolerant so changing your formula could be a good idea if you suspect this to be the case. Nutramigen seems to be a popular choice but of course, discuss with your GP first.

6) Seek help - there is nothing wrong with giving your baby medicine. I have heard more than once, both online and in real life women who smugly lecture me that all babies have reflux and doctors hand out prescriptions like they're sweets and you should try natural remedies. These are the women I want to punch in the face, repeatedly. It's fine if you don't want to medicate your baby, but a) in my opinion if they were as bad as J was or other babies are then you would have done anything to make them feel better, your baby probably wasn't that bad and b)how dare you be so judgemental, I'm doing the best I can and if the medicine will stop my baby's pain then he's getting it. No mother is going to jump straight to giving their baby prescription drugs without trying other things first. The reflux has been my first experience with the "judgy mummy" and I'm sure it won't be my last.

7) Play around with dosages if you need to (under your GP's supervision). Babies are different and even though there are guidelines for mg per kg of weight it seems different doses work for different babies.

8) Some medical proffessionals advise to wean onto solids as early as possible, but I have also received advice that it is not a good idea. To be frank, I have no idea. J is only 14 weeks old so too young for solids. I'm inclined to wait until as close to 6 months as possible but I really think it is up to the parents who know their babies best. I know a mother who started her son on solids at 3 and a half months due to reflux and swears by it. I'm going to see how we go. It is something to think about though if you have a refluxy baby.

9) Finally, be good to yourself.. I found the lack of sleep so difficult but luckily I have a supportive husband and we worked out a routine where he helped more at night, even though he had to be up for work. I also have a fantastic Mum who came over almost every day so I could have a lie-down while she watched J. Take care of yourself, eat well and try and sleep when you can. It's hard to see your baby in distress but remember it does get better and you are not alone, it really is a very common problem and there are things you can do to help.

The Awfulness of Reflux in Babies - Part Three

So, at this stage in the story we were keeping J upright as much as possible and trying to get Gaviscon into him when we could. We were still exhausted and while there was a small improvement this stalled and J still had problems with spitting up, arching in pain and generally having very disturbed sleep.

I had talked to a few people who knew babies with reflux and read pretty much everything the internet had to say on the matter and it seemed that a lot of babies were prescribed proton pump inhibitors. These are drugs that inhibit the production of acid in the stomach and ease discomfort. Our GP had said at our visit that he was not comfortable prescribing these unless a paediatrician had checked him out.

Luckily, due to the previous issue J had with twitching in his sleep we had his 6 week check in Holles Street instead of with our GP. I expected the paediatrician to be quite dismissive as J was thriving in the sense that he was putting on weight and was developing normally and seemed well. The paediatrician was actually lovely about the whole thing and understood that we couldn't continue going the way we were. He prescribed 10mg a day of Losec. The sense of relief I was feeling when I went to fill that prescription was unreal. I was so hopeful that an end was in sight. I informed our GP that the paediatrician had prescribed this and he said he would do a check on Josh in a week or so to see how it was working.

The problem now was getting the Losec into him.The Losec we used was the MUPS (multi unit pellet system). The pharmacist recommended dissolving the tablet in a syringe and putting it in his mouth.The tablet dissolves quite well in water and turns in to a liquidy paste with granules in it fairly easily. The syringe didn't work as a lot of the granules got stuck in the tip. Mr HNW had the great idea of grinding the tablet finely in the mortar and pestle I use for grinding herbs. DO NOT DO THIS!!! I cannot stress that enough. The tablet consists of pellets with an enteric coating that protects the active ingredient from being destroyed by the stomach acid. I had a very bad night with Josh and couldn't figure out why the Losec was not working. Luckily, I re read the instruction leaflet during the night and realised what we had done.

The next thing we tried was placing the tablet on a plastic weaning spoon and dropping boiled water that had been allowed to cool on to the tablet using a syringe. This worked a treat, the tablet dissolves into a watery paste and it's easy enough to get it into J. There's usually a little bit of spillage but we're getting better at it every day.

After a week or so of being on the Losec, I had noticed an improvement but it was obvious that the positive effects wore off during the day, as he was being given the tablet in the evenings before going to bed.. I rang our (very lovely) GP to discuss it with him and he recommended giving him a second dose in the mornings. Since we have started doing this there has been a huge improvement. He is on a relatively high dose for his weight but it is under the supervision of our doctor and we're just grateful that it seems to be working.

While the reflux is still there and causes problems it is much more under control and we are all feeling much more human. J even sleeps more during the day now that he is more comfortable. He is now about 12 weeks old and we're starting to get into a routine, especially with giving him the doses of losec morning and evening. I think things are easier partly because he is getting older and partly because the reflux is much more under control.

If you are in a similar situation, I just want to say please don't despair, things will get better and there really are things you can do, which I'll detail in my next post.

The Awfulness of Reflux in Babies - Part Deux

So, in my last post about reflux we had just started on the road to managing J's reflux and attempting to make him (and us) a little more comfortable. We started by putting a rolled up towel under the mattress in his crib and putting telephone books under the legs to raise the head (actually I tell a lie, they say to use telephone books but who has them these days? Honestly, I used big thick trashy Jilly Cooper novels!). You can buy these if you want to be fancy:

They are little blocks to go under the legs of the cot. However, we have a gliding crib so it doesn't have defined legs (it has bars instead). The Jilly Cooper novels would have to do for us!

Propping up the legs of the crib really didn't make much of a difference to J's reflux, he was still sleeping terribly and was obviously in a lot of pain. We had a few horrendous sleepless nights. We had huge problems getting him to sleep in his crib.Quite a few nights he slept in his rocker. My friend who lives in the States sent J a Fisher Price Rock n Play (see picture below) and it was a lifesaver.

I'm not sure if it is available in Ireland or the UK, I had trouble finding it online or in stores here but honestly we couldn't have done without it. Some nights when J just couldn't or wouldn't lie in his crib because of reflux, he would sleep in the rocker for an hour or two relatively peacefully, as it puts them in a kind of supported sitting position. Many nights I got myself into a tizzy because I know babies are meant to sleep on their backs and I was worried about him sleeping any other way. There are a few articles online about how it wasn't safe for them to sleep in the rock n play which I read with growing horror, in this case Google really was my enemy. Also, many nights when even the rock n play failed us J would sleep on my chest for a few hours. Again, I would tie myself in knots worrying about this thinking I'd wake up to find him not breathing. In hindsight, if that's what we needed to do to get through the night and we were being careful about things then I think it is ok. J needed a mum that wasn't a complete mess and could actually function during the day. As the days went on I got a bit more relaxed about it.

One night during this period I was so sleep deprived I started hallucinating. I took J out of his crib and placed him on the bed while I got ready to feed him (or so I thought). When I went to pick him up off the bed he wasn't there. I was scrabbling frantically in the bed looking for him, pulling back the covers and throwing the pillows off the bed getting more and more freaked out by the minute. Then I turned around and he was still in his crib, I had never taken him out at all. I was so tired I had lost the ability to distinguish between dreams and reality. It sounds so over the top, but it was one of the scariest things that has ever happened to me.That was when I knew we couldn't go on like that for much longer.

The hallucination incident happened on a Friday night so on the Saturday morning we took J to the out of hours GP in St Michael's Hospital in Dun Laoghaire. I had read online that infant Gaviscon was the thing to get for babies with reflux. This is an over the counter medicine but pharmacists are reluctant to give it to babies under one year old unless a doctor had told you to use it (I had been to the pharmacy to try and get it!). We went to the doctor with me hoping he would give us the Gaviscon so we could get J feeling better.

The doctor, after asking lots of questions and ruling out anything more serious said it did indeed appear to be silent reflux and suggested Gaviscon after every feed, but no more than 6 in a 24 hour period. I was delighted thinking it was the solution to all our problems but my optimism was a bit unfounded as it turns out.

The problem with infant Gaviscon is that it is really not compatible with breastfeeding. Gavison needs to be given after a feed mixed with either water or milk in a bottle or a syringe. If you are formula feeding you can mix it with the milk in the bottle before giving it to the baby so it's much easier. You can also get specially thickened formulas for reflux, but you can't mix Gaviscon with these. Anyone who has breastfed a baby will know how unresponsive they are after they have been fed. How on earth do you get more liquid into a full, sleepy and milk drunk baby? It was impossible to get him to take more milk when he was already full.I was very reluctant to give up breast feeding and switch to formula for a number of reasons so wanted that to be a last resort.

Mainly we gave the Gaviscon to him mixed with some breastmilk in a bottle before his feed. Usually this didn't work because it's not designed to be given before feeds and our boy loves his grub and making him wait while we prepared the Gaviscon was not alright with him at all! He'd be hysterical by the time I was ready to feed him, making the reflux worse because he would gulp his feed down really fast which actually aggravates reflux. Sometimes we would wake him up an hour after his feed to give him Gaviscon but it really wasn't an ideal situation at all. If he woke up crying out in pain it was easy to get the Gaviscon in to him but mostly he'd just be groaning and thrashing about in his sleep and waking him up for Gaviscon meant it took a long time to get him back down again, as well as making him very upset.

It did help a little bit but it really wasn't nearly as effective as I hoped. We used the Gaviscon in conjunction with continuing to prop up his mattress and also keeping him upright after a feed for at least 30 minutes before putting him down. This was fine during the day but a right pain in the ass at night when all you wanted to do was to go back asleep. I bought a wedge pillow to prop up his mattress more effectively. There are a lot on the market but I just bought this basic one from Mothercare:

The problem with propping up the mattress was that it would cause J to roll to the side and he'd wake up screaming with his face rolled into the bars on the side. Obviously not ideal - bad mammy territory! To combat this I bought a Clevamama Sleep Positioner (also from Mothercare although many places stock them):

This has bumpers at the side to stop the baby rolling over. It's only suitable for young babies as once they have learned to roll over it's not safe. It did solve the problem of him rolling to the side although he does slip down it during the night, meaning you have to wake up and move him back up every so often. It's also not suitable if you swaddle your baby and we found it didn't really work while using a gro bag so we had to retire that temporarily.

There are also specialist reflux wedges for babies that look like this:

The baby sleeps in a little sling attached to the pillow. How clever is that? They are extremely expensive (about €200) but there was the odd night I'd be sitting holding J up and browsing on my iPhone were I was thinking screw it, it's only money, if it makes him feel better just get one. I would have done anything. In the morning I always saw sense though, to the immense relief of Mr HNW!

So we tried all of these methods over a two or three week period and while there was a small difference in J's reflux we were still struggling. During the day J was a very happy little baby and luckily, we never had any problems feeding him. Some babies with reflux start to associate the pain with feeding and refuse to feed. J has always been a good grubber and was putting weight on well. Still, we were exhausted and we felt like all we talked about was J and how he was. It became a full time job feeding him, trying to fit in the Gaviscon and constantly sitting with him upright in our arms.

To be continued......