How long to stay on meds ?

[Mellymoo]

Hi there

You have helped me out int he past about my DD who is 14 weeks old with relfux.

She is on 20mg Losec a day. It seems to be working and I arrived at that conclusion because she is having more good days than bad. ALthough when she has her bad days they are REALLY bad ! I always thought that when they were on meds , that they weren't supposed to have any bad days ? When she had her bad days I always thought the meds weren't working, but some lovely ladies explained to me in the other forums, that no matter what meds they are on they will still have bad days.

Anyhow, I am wondering - at what point do you take your child off the meds ? The paed suggested I put DD onto basic solids early as it might help, and I have done this, and she is taking to the solids very well, without any side effects (been about 5 days now on rice cereal). Do you just 'trial' taking them off, and then if the reflux returns then you know you have to put them back on meds again ?

I never thought to ask the paed this when we went ot see him a couple weeks ago, I always forget to ask him something and didn't want to book another $80 appt just to ask him this !

Thanks

[RISA]

Hi,
It's great to hear that she is having more good days than bad, though I'm sorry to hear that her bad days are so awful still :(

The ladies on the other forum are right, reflux can be cyclic, and you may have good and bad days (for no real reason you can ever figure out). Sometimes medication will seem like a miracle cure and a bub won't have any bad days, but often, reflux is not always well controlled all the time, no matter what we try. They are all so different, but if you feel that it is becoming more of an issue, then please pursue it too. Just because she has reasonable control now, doesn't mean things won't get better or worse as time goes by (but hopefully better). There are things that can flare reflux, such as teething, a change in routine, a change in weather, crawling, vaccinations, illness and being overtired. Sometimes these things you can look at and realise why the bad day, but often you can't.

(I'm sorry, but I don't remember if you breast feed or not, and one thing that comes to mind when she is having really bad days, if you do breastfeed is if you have had more dairy than normal in the couple of days beforehand. It may help if you keep a record of what you eat and when her bad days are, and see if there is any pattern that way too).

It's hard to answer the question about when to stop giving medication. It's natural to want to know though. After all, it's not what we really want for our kids, is it, if its' not completely necessary!! Sometimes parents want to try weaning to see if their bub still needs it, and find out quickly that they do. At least then, they have peace of mind about giving it. Other times, it can be successful.

Generally the doctors will give you a guide, so you do really need to at least talk to your gp about it, but in general terms- often it's good to wait until they have been well controlled and quite stable for quite some time (and are not in the midst of teething, or just recently had vaccinations etc, or there are no recent changes- like you having just recently introduced solids).

If you do want to try weaning, check with your gp, or give your paed a call (perhaps they will be willing to talk to you about it on the phone, to save that costly visit). They may be happy for you to try weaning when you feel comfortable doing so, or they may prefer you to wait until a set period- just depends on each doctor. If you find it doesn't work, then yes, you put them back on it. From personal experience, I found that at the first sign of things going bad, the medications need to be restarted- I found the longer I waited, wondering if it really was reflux, the longer it took to get back control of the reflux.

As with anything to do with reflux, there are no 'right' times- it is still trial and error, and you often need to be guided by your instincts.

I hope that helps
Glenda

[Mellymoo]

Hi there

Thanks for the reply. The paed sent me an email saying the urine tests were all clear and that if she still doesn't settle, to double the Losec again to 40mg.

Now, I have sent him an email back questioning this because some of the ladies on the other forums told me 20mg is the 'normal' adult dosage and that 40mg could potentially be harmful. Have you ever heard of a baby on such a high dose of Losec ? Do you know how this could impact her health ? I have asked the paed these too and await his reply, but I seem to be getting more answers from you than him !!

I am wondering if she is teething though, which has flared her reflux ? Is she too young to start teething (14 weeks) The last 4 or 5 days she has been waking up a lot at night wanting her dummy, and sucking on it like she's going to eat it - like her gums are sore or something. Just a thought ?

I guess I'm at the stage though where I'm hoping she'll grow out of it soon and have 'accepted' her reflux and some days get tired of thinkign about going back to the doctors again for another prescription for something different - like I can't be bothered some days. SOunds harsh I know, but in some ways I've come to accept that this is how DD is. I look at it that there are much worse reflux babies than mine, so I guess I shouldn't complain ?!?!

She is bottle fed by the way.

She seems to be taking the solids really well too.

Thanks

[RISA]

Hi,
It's good that you know her urine is clear- thats one less worry, I suppose.

I know that 40mg seems like a really high dose, especially given that a lot of adults only take 20mg, but it is really common for babies to be given such high doses. Even when my son was a baby (he is almost 11 now), he was on doses like that, and from what I have heard from the other parents in our group, a lot of doctors are comfortable prescribing even higher these days. I believe it has something to do with the rate that it is metabolised- that babies/children don't metabolise it as well as adults do, so the dose seems higher. You are doing the right thing though by questioning it, and I hope your dr can put your mind at ease. Sometimes with younger bubs like yours they keep an eye on liver function, but I'm not sure if that's always done either.

It is so hard to know if she is teething or her reflux is really bothering her, as those things can also mean pain elsewhere- and are common with refluxers. It is possible for her to be teething at that age, but I dare say you are playing lots of mind games about what is going on too- could it be this, or maybe it's that, maybe I should do this, or maybe this is normal and I just can't cope, etc. Thats normal too, in case it is bothering you.

IF she is teething, that could explain why she has gotten so much worse lately, as that often flares reflux, though it could also be the change in weather, the introduction of solids, or just her age (more active, still on mostly liquid diet, unable to sit up on her own- lots of bubs get worse at that age).

Have you tried giving her Panadol or an antacid, to see if that helps? IF she's teething, perhaps you could try giving her some ice chips or try freezing some water in a teat/bottle and let her chew/gum on that? Perhaps that would be worth trying?

Also, isn't it the same time frame that you have introduced solids? Even though she seems to be enjoying them, perhaps she isn't ready for them? Have a think about when the night waking/dummy sucking etc worsened, and see if it corresponds. That might give you something to work on too.

It is normal to go through the guilt thing too, that you know that things could be so much worse, but at the same time, things are really tough for you, and you have every right to feel that way. It's hard to keep pushing for answers too, and I think that by 'accepting' her reflux too, you have come a long way. I know it's hard to do, especially when you are so tired, but I hope you're also able to continue to trust your instincts and help her. You are doing a fabulous job so far, and I hope you have given yourself a pat on the back for all your work. Life will get better- can't promise when, but it will get better at some point. I know it's hard to see that right now, but it does happen.

Are you getting any support through all this? Do you get a break, even for a little while? It is really important that you are able to look after yourself, and I'm not surprised if it is all getting on top of you. Caring for a refluxer can be really tough, and most people just don't seem to understand that.

Have you thought of joining our organisation? You would get a lot of support there, and we also arrange get togethers etc, depending on where you live (plus have online parent groups, regular newsletters, printed literature, a library and online chats). Just wondered if that would help, even though you do have your forum you refer to.

I hope that helps once again, and I hope you hear back from your paed soon. If you are still not comfortable with things, perhaps you need to consider seeing a paediatric gastroenterologist? Just an idea,

Glenda

[Mellymoo]

Hi again

I didn't give her solids last night to see if it made a difference, but it didn't - she stil woke. SHe woke about every hour to an hour and a half, and went back to sleep after I put the dummy back in her mouth - would this be from reflux ? If it was, I would have thought she would have been carrying on a bit more ?

I'm still waiting on the paed to get back to me too.

I guess I'll never figure out why she has been unsettled the last few days. It started Wednesday and the only thing I can think of is that her sleeps have been out of whack because we've had to go out a bit, so she's been awake a bit longer than usual and may have become overtired. It does always play on your mind though, and you're right about how you even start to think that this behaviour is normal and I'm just not coping - other people don;t understand and say things to minimise this stuff.

I did leave DD at my MIL's the other day for a few hours so I could get some shopping done, but I got a c all on my mobile to ask me to go and get her because DD was crying so uncontrollably and MIL couldn't calm her down. A bit of a downer, as I don't get much of a break and don't leave her with anyone because I know I will get a phonecall like I did the other day.

Thanks again

[RISA]

Hi,
If there is any intolerance issues, then it may take a couple of days without solids to see any difference- but if you don't feel it is the problem, then of course that's fine to discard that idea. It does still come down to your instincts, and doing what feels right.

With the night waking, and going back to sleep with the dummy, it actually sounds like she might be developing a habit of not being able to sleep without the dummy rather than reflux, so I guess you need to determine if it's a pain waking her, or not. If it's pain, then perhaps some Mylanta (if the dr is okay with you using it), might help settle her, and she may not need the dummy then either. It's hard to know, though with my son, I used to get up to him heaps during the night, to the point that he just didnt know how to put himself back to sleep when he woke. Once we got that sorted out (we went to a sleep centre), he managed much better. They made me realise that even though i knew he was in pain, and that he wasn't doing it on purpose, I wasn't actually helping him with the pain by getting up to him either. That made it easier for me to allow them to teach him how to sleep better.

You could very well have found the answer- you said that you have been going out a bit, and her sleeps have been disrupted. Both these things can trigger a flare in reflux (a change in routine, being overtired etc), so that may be it. It's amazing that something so small can make such a big difference, but with some refluxers, it can be a huge issue!! Perhaps if you can get that back to normal, the reflux will settle eventually too???

I agree totally about others not understanding, and trying to minimise what's happening. Thats why RISA exists, and why I'm so passionate about helping other reflux families. PArents like you just don't get the support or understanding they need, cos nobody really gets how bad reflux can be unless they've lived it themselves :(

I am sorry that your break was cut short- I'm sure you really needed that time out, but perhaps it will help if you think of it in this light.... the fact that your MIL had to call you home because she wouldn't stop crying, and she couldn't cope with it- proves that it ISN'T YOUR FAULT and it isn't anything you are doing wrong!!! Hopefully your MIL can now acknowledge that what you have to deal with 24 hrs a day is really tough, and if she hasn't worked that out, it might help to point it out to her. Having someone else validate how difficult it can be, can be so good for the soul!!! and can stop all those doubts that you are thinking about right now. She IS a high needs baby, and you deserve all that support/validation!!!

I hope that helps

Glenda