Sliding backwards ?

[Mellymoo]

Hello

I have a DD who is 3 months old. From pretty early on, she had the signs and symptoms of reflux and the GP initially put her on Zantac - 1ml, twice a day which seemed to be working for a while, then it seemed to stop working.

I took DD back to the GP, who suggested we put her on Losec - 5mg, twice a day. This also seemed to be working, although much messier to administer.

However, today and yesterdat, and the other odd day here and there, she has been inconsolable. She is bringing up a lot of milk after her feeds and windy too. Nothing seems to calm her down and it's like the more she cries, the more she can't stop herself and just gets worse and worse, to the point where she is hysterical.

It takes me ages to get her off to sleep, which is only ever in my arms, and she's a big baby (7kg) and is killing my back !

Today it took me 30 minutes in my arms walking around with her. She fell asleep finally, then I put her in the cot. I went outside to hang out some washing, came back in and she's going bananas again in her cot.

It's very tiring.

I thought the Losec was supposed to be better than the Zantac ?

Now I don;t know what to do - should I take her back to the GP ? He said last time if the Losec didn't work, that he would give me a referral to a pediatric docotr that specialises in this sort of stuff and they may have to do some sort of invasive investigation to see what's going on.

Now I'm thinking - it's not EVERY day she is hysterical like this. But there's more and more of these days more often.

AT what point do you agree to do the invasive investigation ? What else can I do before we do this ? I mean, how 'bad' does your baby have to be suffering from reflux before you decide to have this done ?

Why isn't the Losec working now ? Some days it seems to work, some days it doesn't.

I'm just hoping that I can ride it out until she is on solids and maybe that will settle her down.

I thought that the invasive procedure would be for babies worse than mine - am I making sense ?

Today she was so bad I just had to put her in her cot and let her cry. She was crying in my arms and I was getting worked up too so I had to put her down and walk out. I felt terrible for doing that too.

Help !

[RISA]

Hi,
Goodness, it sounds like things are really getting on top of you at the moment, which is hardly surprising. Most people don’t realise how difficult and overwhelming reflux babies can be, but unfortunately, that is the reality for lots of families. Because of that, though, they don’t get the support and understanding that would make so much difference to their lives.

You did exactly the right thing by putting her in her cot and letting her cry, no matter that it was extremely hard on you to do that. Sometimes it is the safest option, and it was extremely responsible of you, so well done. I think there are lots of parents who have been pushed so far, and while the majority do manage to find the strength to walk away, it is scary that some don’t (and of those who don’t, I wouldn’t mind betting they are dealing with a baby who is constantly, inconsolably crying). Please don’t feel terrible for walking away at that time. You are only human, and everyone has their limits. You took the best option! – so please don’t be too hard on yourself.

I think it is a good idea to take her back to the GP- that is what your instincts are telling you, so that is probably the best thing to do. They do need to know what’s happening, and it still sounds like she is very unsettled. There may be a number of factors for that, or a combination of them, and it can be really difficult to figure out why/what they are.

How long has she been on Losec? was it the same with Zantac, in that it worked well initially, but then it stopped being so effective? or do you just find some days are better/worse than others? You are right in that losec is more effective than zantac, by the way. Reflux can be cyclic- a lot of children will have some good days, followed by some bad days, for perhaps no reason you will ever figure out (and you can feel yourself go nuts trying to). This may be why some days the losec seems to work, and other days not.

Sometimes though, especially with Zantac, it is because bub puts on weight. When she was on Zantac, it may have been necessary to increase the dose as she put on weight, to maintain the same dose/kg. That is how Zantac works.- and it sounds like she has put on quite a bit of weight in the last few months!!

Now that she is on Losec, that has changed, as it isn’t weight related, but if it has been several weeks since she has been on Losec and you have now noticed a general deterioration, I wonder if you are using the Losec suspension. Depending on the suspension agent the compounding pharmacist used, the shelf life can be extremely short- from 10 – 14 days, through to at least 45 days. Depending on how long she has been taking Losec, (and if she is on the suspension), it might be worth checking that.

There are things that can flare reflux too, things like teething, being vaccinated, ill, a change in routine, overtired, a change in weather, and things like that. Do you think that any of those things could be impacting at all?

I am also wondering if she may have some kind of food intolerance, as it seems that quite a large number of refluxers do (cows milk protein is the most common, along with soy protein a close second). Is she breast or bottle fed? if breastfed, then you may choose to consider trialling a strictly no dairy/soy diet at some point (but please, if you do try this, seek medical guidance as your diet is extremely important for both of you, and important nutrients must be replaced/balanced. If she is bottle fed, the GP may be able to write her a prescription for one of the elemental formulas such as Neocate or Elecare (their proteins are more broken down). Have you discussed that option with your doctor? For some refluxers, they can make an enormous difference (but of course, only if food sensitivities are an issue), and even though the formulas can taste dreadful, a lot of babies seem to drink them quite happily.

Trying to work out what the best treatment for a refluxer may be can be extremely difficult. What works for one may not work for another and it can often involve a lot of trial and error. It is always best to try the things that you feel comfortable with, and discard the ideas you aren’t happy with. One of the best things I was ever told, was that it wasn’t my fault, and to trust my instincts, so I am passing that onto you. None of this is your fault; and you are not doing anything wrong. If you knew what would work for her, I am sure you would be doing it, and the fact that you aren’t just means you haven’t figured it out yet!! Please don’t feel bad for this, or inadequate in any way, as it is often a very difficult road, and one you would not have been prepared for! Trust your instincts, and you are wondering about taking her back to the GP, so that would be my recommendation. Apart from anything, the GP does need to know what is going on, and whether the Losec is helping (or not, as the case may be).

You sound like you are unsure whether your bub would qualify as being severe enough to warrant seeing a paediatric gastroenterologist (a paediatrician who specialises in gut issues). There doesn’t need to be any specific qualifications, but she is unsettled and doesn’t seem to be responding well to the Losec, so the GP may like further guidance. That is enough reason to see a specialist. They don’t always feel the need to undergo testing, so it may be better to worry about that if you know for sure it is happening, rather than worrying about it just in case. I am sure you have more than enough to worry about right now and the specialist, if you do see one, may not choose to do anything like that just yet. They all have their own ways, and preferences too, so it’s impossible to tell.

A lot of people will recommend using thickened feeds I’m sure, but since you don’t mention she is vomiting, I’m not sure that would be beneficial for her. Thickened feeds do tend to be more successful for bubs who vomit a lot- though that doesn’t mean it won’t help either. It may be something else you would like to consider all the same. My son did seem to improve if I gave him a spoonful of thickened formula (following a breastfeed) though it didn’t stop him refluxing.

You are making sense, by the way, about babies who are more severe than yours needing invasive investigations- it just depends on what the doctor wants to find out/what they are looking for. It isn’t a competition either with whose baby is more severe! It is often a matter of just trying lots of things to find the answers you need to help. Sometimes investigations are warranted and other times they aren’t. There are lots of different options too, so even if you do see a paed gastro, it doesn’t mean testing will be done automatically. If testing does become necessary or an option at some point, you have every right to ask questions and you have the right to choose whether to go ahead with the testing or not. It won’t be done without your approval and you are quite welcome to contact us of course for further information on each individual test.

She has put on a good amount of weight- how are her feeds going? Is she feeding well, or perhaps she is wanting to feed quite frequently? Sometimes bubs who feed frequently because of their reflux can put on heaps of weight, so that is why i am wondering what her feeds are like.

Sorry for the long answer, but I hope that information helps and please remember you are doing a good job. Don’t expect to always have the answer- it is a steep learning curve! and you can only do your best. Would it help if you joined our organisation so that you could have support and understanding of reflux families. That can be really helpful too, just to talk to others, and it can help parents feel not so alone.

Glenda

[Mellymoo]

Hello

Thanks for the reply

I cannot get in to see the GP for quite some time so out of desperation I rang the pediatrician. He said to double the Losec dose, so that she is taking 20mg per day and he is booking in a time to see us next week.

As for her feeds, she generally has 6 bottles per day, about 140-150ml each, which I didn't think was excessive. If she is having a terrible day, it might be 7 bottles, but that is only once in a while (say once a week or fortnight)

It can drive me to tears a lot these days, having a baby that no matter what you do, still cries. I'm convinced that reflux mums don't have a social life - I know I don't have much of one anyway. I'm pretty hosuebound, as it's so nerve wracking going out when she carries on like that.

I have noticed the last few days she has actually been bringing up a lot of milk too, which she never used to do so much.

She has been on the Losec (10mg per day - I split the tablet in hald and give to her in 2 lots, they told me I couldn't get the suspension here) for about 3 weeks now. It seemed to be working at first, but the last 4-5 days has been awful, it's like she hasn't been taking anything at all.

She was vaccinated (her 2 month vaccinations) about 3 weeks ago, I didn't think that would be why she is still like this 3 weeks later ?

Anyway, she's starting to wake up (joy) so better go !!

Thanks

[RISA]

Hi,
and good on you for contacting the paed when you couldn't get through to the GP! I hope the increased Losec makes a difference, though I am really pleased that he is following it up with an appointment next week as well.

Since she is having the Losec capsule rather than the suspension- are you making sure not to crush any of the granules? I know it isn't easy giving it to a baby, but it is really important they are still intact.

With her feeding, it was more that I was wondering if she wanted to comfort feed- some bubs with reflux learn that when they are drinking, it actually feels soothing, so they demand to feed a lot. Because she had put on a fair bit of weight, I just wondered if that was what she was doing. (Other bubs learn the opposite, that feeding is what makes them feel horrible, and refuse to feed- so they are all different!)

Do you think that could perhaps be contributing? Does she seem to want to feed fairly often, or not?

How did she go after her vaccinations? Has she been worse since then, or is it really only the last 4 or 5 days? If just the last few days, then I wouldn't think the vaccination was responsible, but if she has been worse in general since them, then it is still possible.

The flare may be nothing you can ever figure out a reason for, but it may be that the weather has changed (it has here in Brisbane), and sometimes, that can be enough to flare them- it doesn't make a lot of sense, but a lot of parents report flares at those times.

I understand perfectly about how isolated you feel, and how you are hesitant to go out. I even got to the stage that I just didn't have the energy, even though I knew my son would be a lot better if we went out (he was distracted), so many times, I just couldn't do it! Exhaustion and chronic stress can do that!! I also understand about it driving you to tears. It is REALLY common, and perhaps it will help you to know that all those emotions that you are going through are very normal. (yet most mums feel guilty for having them and feel as though they shouldn't, and so feel even worse) I hope it helps for you to know that whatever you are feeling, other mums in your position do too, and you are not inadequate, and you are not a failure. There is only so much you can take, no matter what your expectations are of yourself.

Do you have any family/friends you can call when you need some time out? Sometimes that can help, but if you don't have anyone around you who does seem to understand, and will listen to you, then perhaps email us, or phone our messagebank and one of our reflux mums can give you a call. Additionally, it may help if you joined, as it can make such a big difference to have that ongoing support and understanding from so many people- the online support group is fantastic, and you'd be amazed at how helpful everyone is (and that you can be so helpful in return).

Have you seen our website? it's at reflux.org.au - which might help as well.

You are doing a great job, and you have continued to look for answers when it was obvious to you that things were still not right. Good on you for that, and I hope it helps for you to know how well you are doing. Reflux babies can be difficult, overwhelming, devastating, and you can only do your best!!! :)

I hope that helps
Glenda

[Mellymoo]

Hi again

Thanks again for the reply.

I don't think she is a comfort feeder, although she is a big girl, but she was pretty big when born (4.37kg or 9lb 10oz) She spaces her feeds out pretty well - 3-4 hourly and only has one bottle overnight.

I'm hoping the increased dosage will help. It's a nuisance giving it to her though, she spits most of it out as soon as I give it to her so I have to be real quick to get her to swallow it somehow as soon as it goes in her mouth. It ain't easy !!

Anyway, we'll see what happens. Someone even suggested to me that I put her on Karicare AR, that they had 3 reflux babies and it was brilliant apparently. I did try an AR formula but it wasn't Karicare, perhaps I'll give this a go as well. Would I have to give this every feed ? I have her on S26 gold at the moment - can I alternate between the 2, or should I just keep her on the Karicare AR all the time for a real difference ?

BTW - she never used to be a chucker, but the last 4-5 days she has been bringing up quite a bit of milk after each feed.

Thanks again

[RISA]

Hi,
Wow, she was a big bub born!!! :P

I totally agree that the Losec is really difficult to administer, though over time, parents seem to figure out a way that works for them. An option you may have, is to get the suspension from an online compounding pharmacy (in Australia)- there are a few I believe. I know of at least one, because I used them myself just recently.

Another option is to perhaps alter your technique in giving it? Do you put it on a spoon or in a syringe? Some parents prefer one over the other, so it might be worth experimenting. You don't have to add a lot of water to get it to dissolve, and it should be room temperature. If you use a syringe, use one that has a wider neck so the granules don't get stuck- and with a syringe, you may be able to get it further back into her mouth so it's harder for her to spit out (though babies are soooo good at that trick lol)
It is less effective if you give it near milk/formula as it isn't the right pH level either- giving it with just water is recommended if she isn't able to have apple or pear puree.

With the thickened formula, you need to do what you feel comfortable with. It may be better though to at least hold off using it until you have spoken to your paed next week. You have made a change already with doubling her Losec, and the problem with introducing other new things, is that if she improves, you are then stuck with trying to figure out what you have done that did actually help. If you only make one change at a time, it is much clearer. And you are seeing your paed next week, so it will be a perfect opportunity to ask him what he thinks.

If doubled Losec doesn't help and she remains distressed, then I wonder if the paed will suggest trialling an elemental formula to check for cows milk protein intolerance, and various other intolerances. Rather than using a thickened formula, and changing it again so quickly, it may be helpful to wait and see if that is suggested as well.

As I mentioned before, food intolerances/allergies are very common in refluxers, so that is something that may need to be considered at some point.

One other thing, is that this mum's babies responded well to the Karicare AR formula- would it be more likely they were responding to a thickened formula, and would it have mattered which formula was used? I have no real idea if swapping between the two formulas throughout the day would be helpful- perhaps it would only make things even more confusing at the moment though??? Sorry, not sure at all on that one!

It is important though that you do what you feel comfortable with, and i hope you get some answers for her soon. You are doing a great job, and good on you for pursuing this.

Glenda

[Mellymoo]

Hi

Just thought I would give you an update - took DD to the paed yesterday and he wants to test her urine for any sort of infections as well as cows milk protein allergy. If this all comes back clear and she is still unsettled, he has given me a script for the Losec 20mg tablets and I have to give her 2 of these each day - so 40mg per day, which is double again of what she is now taking. He doubled her dose last week from 10mg @ day to 20mg @ day.

He also suggested starting her on solids in the next week or so - she is now 13 weeks. Just farex and simple stuff like that.

We'll see how she goes.

She has calmed down a bit I've noticed in the last couple days since her dosage was upped, so hopefully that's a good sign.

Thanks again

[RISA]

Hi,
I'm so glad that you have a plan of action, and things are looking better. I hope this is the answer you need!!!

thanks for letting me know :)

Glenda