GOR bub

[dylanmum]

Hi, I'm new to this forum so forgive me if I've made any mistakes in entering my question. My son was diagnosed with GOR at 10weeks. His paediatrician has put him on losec which seems to have helped with some of the symptoms. Unfortunately, he still has many days were he is very grizzly for the majority of the time and although he sleeps reasonably well at night, he still has an irregular daytime routine - often napping for only 30 minute intervals a few times a day. Is there any advantages to introducing him to solids earlier than the recommended 6 months? (He is now four months old) Reason I'm asking is, my 5 yr old seemed to settle after I introduced solids (she had reflux & colic but was not unsettled during the day). Also what is the average age that this condition starts to improve? I'm hoping he doesn't have to suffer for much longer - we have tried everything to ease his discomfort.

[RISA]

Hi,
Thanks for contacting our organisation, and no, you didn't make any mistakes with your question :)

Good on you for getting that diagnosis so early, but it sounds like he is still quite uncomfortable! Have you spoken with your paed or GP about that? Are they aware that his reflux is still not properly controlled? It isn’t unusual at all, as often it takes a while to get that control.

It’s great to hear that the Losec does help somewhat, but I wonder if the drs would consider increasing the dose. Very often, bubs with reflux need quite high doses to control their reflux (I think because they don’t metabolise it well) though of course they generally start off using reasonably low doses in case they are effective enough.

Something else to consider, is if you are having any problems administering the Losec; it's often hard to give medications to a baby of that age. Are you using the capsule and partly dissolving it, or are you using a suspension? If you're using the capsule, are you aware it's important not to crush the granules? Also, not to administer it with his milk feeds. If you're using the suspension, it's important to shake the bottle really well. Also, they often have a very short shelf life, so it's important to check with the compounding pharmacy so you know how long that is (it depends on the suspending agent they use- some are as short as 10 – 14 days).

It's important to know that all refluxers are different, and they all respond to different treatments. While it makes it much more difficult for you, it really is a matter of trial and error until you find something that helps. It's important that you trust your instincts, and do what feels right for you and your family- but please also keep in touch with your doctors if you're unsure of anything.

Okay- will solids help? That isn't an easy question to answer because of that. It really is trial and error. Some refluxers do very well with the early introduction of solids. Others are better to wait as long as possible, especially if you suspect any issues with food sensitivities. Have you spoken with your doctor or child health nurse about it? They may have other ideas as well, though it sounds like you would like to give it a try. Did your first child start them early, or did you just notice a big improvement when they did? Every child is different, but you may be able to use it as a guideline.

Have you tried using thickened milk at all? Sometimes that’s an option too, even if you are breastfeeding. A spoonful of thickened milk before or after a feed can sometimes make a difference, so that’s another idea you may like to consider if you haven't already.

Average age for reflux to not cause problems- well, I’m sure you would have heard that most children outgrow reflux by the time they are sitting up and are on solids. We were given that milestone, and I hung all my hopes on that, only to be devastated when that time came and went and nothing had changed. I hate giving specific time frames as it is just too cruel if it doesn’t happen. It is good to know that it may be outgrown then, but please be aware it is only a guideline. Others grow out of it when they are upright/walking, others around the age of 18 months; while some don’t seem to outgrow it at all unfortunately. It really is impossible to know how long the reflux will be an issue, and the best we can do is to try to maintain control of it.

Just so you know, reflux commonly flares as a result of lots of things- like teething, infections/colds, immunisations, crawling or trying to crawl, being overtired, a change in routine, or even a change in weather!! It always pays to know that, as it can be very confusing if things deteriorate. I always found it helped make sense of things.

You say you have tried lots of things, so that’s great. That’s all you can ask of yourself, and to just keep trying things and following your instincts until you find the answers he needs. I’m sorry I couldn’t be more specific with your questions, but I hope that helps all the same,

Glenda

[dylanmum]

Thanks Glenda, It's nice to know that we aren't the only ones whove been through this. So many people think that reflux only means some extra washing!!

Dylan is on HA-AR formula 5 feeds of 175ml per day. I initially took him to the child health nurse and insisted that there was definately something wrong so she referred me to a really good paed. (Our GP just fobbed me off and said that he couldn't suggest anything other than what we were already doing and that he'll grow out of it.)

We have Dylan's cot elevated at the head so that he sleeps better at night and he sleeps in his rocker during the day because he often only naps (we soon realised that we were wasting our time putting him in his cot for day sleeps as we would only be getting him back out again 20mins later anyway) We also feed and keep him upright for 30mins after feeds and allow some time for his tummy to settle before we try burping him.

He doesn't spent much time on his back or belly because we figured out quite quickly that this made his reflux far worse. We put 1 X 10mg losec tablet into 100ml of cool boiled water and allow it to dissolve, we then split the 100ml mixture into 2 X 50ml. We mix the water with formula because we were told to do this by the paed as he fed poorly from birth. At the time of the initial consultation, Dylan was struggling to feed 100ml in a four hour period. He now feeds 4hrly and takes 175ml. He doesn't throw up many of his (entire) feeds now but he still cries an awful lot during the day and he still "spills" regularly up to 2 hours after feeds.

My second daughter, Blythe (now 5) suffered with reflux and colic so I was pretty familiar with many of the reflux issues and solutions to help improve the condition. She basically screamed every night from 5pm to 1am until she was 8 months old. She threw up every feed but was not unhappy during the day like Dylan is. I started her on solids at 4 months but she did not have the same feeding issues that Dylans has. Blythe would throw up nearly all of her feed - every feed but she would happily take another one shortly after and keep it down.

I have noticed that the reflux goes in cycles. For instance, yesterday Dylan slept all day and today he's screaming his head off??? I have also noticed that immunisations, colds and hot weather flare up his reflux.

We have another paed appt. 30th May so I will ask her if she recommends introducing solids early or upping the dose of losec.

Sometimes, I have wondered if he is allergic to something in his formula? He is on Karicare HA-AR and his stools are normal but he seems to be in terrible pain with (What I think is...) wind 2 - 3 hours after each feed. He is difficult to burp so I'm thinking it is possibly just wind causing his discomfort. I also noticed that he brings up mouthfuls (spills) approx 1hr after feeds (when his stomach acids are at the highest) so we try to keep him upright during this time also.

I appreciate all your suggestions and we will look further into them so that hopefully our little boy can get some relief soon. Like I said, it's just nice to know that there are others like ourselves out there.
Thanks again Glenda

[RISA]

Hiya,

We're all happy to help- as reflux parents ourselves, we all know what it's like to try to cope with our reflux bubs. As you say, so many people think nothing of reflux, and can't see why we would have any problems. One of our mums coined the term, which I think is very apt, and referred to them as 'the blissfully ignorant' LOL

I think we may have uncovered one of the main issues, which is the way you have been told to give his Losec. I've never heard it being given like that before, and I'm amazed that you are able to get it into him. It sounds quite difficult, but then again, giving any medication to a bub is never going to be easy, is it!! :)

We got information from AstraZeneca, who manufacture Losec, and their specific instructions to assist in the administration to young children -

- Do not crush or chew the granules.
- The tablet may be dispersed in non-carbonated water (mineral water is not suitable) or non-carbonated fruit juice. Water should not be warmer than room temperature. (nb fruit juice isn't necessarily a great idea as it can flare reflux/cause irritation in a refluxer, no matter what age)
- Alternatively, you may disperse it in a small amount of water, and then add it to a spoonful of pureed apple or pear (if appropriate).
- If using something other than water, it must be slightly acidic and soft enough so that the child won’t chew it (to ensure the tablet is not chewed or crushed).
- Do NOT use milk/breast milk or formula in place of water, as it isn’t acidic, and the medication will lose effectiveness.
- Please note that the tablet will not dissolve completely in liquid- the small enteric-coated pellets containing the active ingredient will remain intact. Please take care not to crush these pellets.
- Once the tablet is dispersed in liquid, it must be consumed immediately or within 30 minutes.
- Give at same time each day.

So, what some of the parents do
- add a ml or so of water to the capsule and let it dissolve. Put it on a baby spoon and give it to bub (replace any granules that happen to fall out) or
- dissolve as before and put in a wide necked syringe (a nurofen syringe, or 10ml syringe often work best) or eye dropper and syringe it into bub's mouth

Everyone develops their own technique, and you may come up with your own way of doing it, but you may find it more successful if you try one of those suggestions. I'm not sure why you are splitting the dose- does he have it twice a day, or you just use half the amount? If using it twice a day, I doubt it would be effective at all by the end of the day, and only using half a dose means it's quite a small dose. That may be something else you may like to talk to the paed about.

Realising that reflux goes in cycles can help- saves getting your hopes up too high that the reflux is finally beaten. I found it's much easier to cope if you are aware of it! That emotional rollercoaster ride can be so difficult to be on. It helps so you don't feel too disappointed when/if things do deteriorate once again.

It may be that he is diffcult to burp, and isn't bringing his wind up, which is why he is so windy a couple of hours past a feed. With him grizzling and crying, he may be swallowing a lot more air too, and sometimes bubs tend to gulp air when they cry. It may also be because of a food sensitivity, so it is worth keeping in mind. It is so hard to know what is going on, and keeping your mind ticking over like you are doing, is really good.

It sounds like you're doing really well, and you have obviously done a lot of research into all this, so I hope you find the answers he needs. Perhaps just a different technique to administer medication will make an enormous difference. Perhaps adding a spoonful of thickened milk before or after a feed will make a difference. Maybe burping him more frequently throughout a feed, rather than waiting a while to burp him, will help too.

I wish I could tell you the answers you need, but by continuing to ask questions, considering different options, and trying different things, I'm sure you will come up with something that works. You are following your instincts because you know something is still not quite right, so good on you for that. It isn't easy to continue to pursue it, but you know it's important that you do.

Sometimes it can help if you keep a written record of at least a couple of days- record things like feeds, sleeps, when he cries etc. sometimes you can see a pattern emerge, and other times, it's good to show the doctor as it can give them a better understanding of what's going on.

I hope that helps, and good luck with finding the answers. I hope your paed appt goes well.

Glenda

[RISA]

PS I meant to mention that Losec can also cause a bub to be windy, so that may also be contributing. Confusing, I know, so good luck sorting it all out.

Glenda