15 month old: silent reflux, Help!!

[mosaic]

SInce my daughter was born we have struggled with silent reflux. At first we thought it was colic but then she started getting a really sour smelling breath. We have tried everything from chiropracters, kinesiology, etc. She has been on Zantac, Gaviscon and lately she is on Nexium tablets which we crush and put in some food. She has been on Nexium for a while now on and off. But lately she has been waking even more through the night with bad stomach cramps and diarroeah. I looked up nexium and found out it can cause these symptoms so now i don't know what to do! Do i continue with nexium and she gets the stomach cramps or take her off and she wakes up from her reflux.
I was thinking of taking her to a gastroenterologist but wasn't sure if there is anything they can do or am i just being a paranoid mother!
Everytime we went to the doctor he kept saying that she would grow out of it in a few months and those few months have never arrived. Please any advice would be great. I would love to know what a good night sleep is again. We usually end up spending the night on the floor with her. She lays on her little flip out sofa!!:fingerscrossed:

[RISA]

hi,
thanks for contacting our organisation, and congratulations on your little daughter. I’m sorry to hear that she is still struggling with reflux (and also that the dr has been telling you she will grow out of it soon) I know what that’s like, and I found it quite devastating to wait for a time that just never seemed to come. it would’ve been much less painful if someone had told me it was possible not to outgrow it. I would have perhaps tempered my hopes just a little so I wasn’t quite so crushed each time a milestone would come and go.

I don’t know if it helps, but it isn’t uncommon for refluxers to still have reflux at that age, and it’s also still possible for her to grow out of it. Generally they say that if they still have reflux by the age of 2 yrs, then they are likely to continue to suffer from reflux, so she still does have a chance!!

I’m wondering how long it has been since she is waking at night with bad cramps and diarrhoea. While it’s possibly the result of Nexium, there are also other possibilities that come to mind. One is that she has some kind of gut infection that is causing those cramps/diarrhoea, and another is that she is actually quite constipated (diarrhoea can be a sign if constipation gets bad enough). (Constipation seems to be really common with refluxers) Either way, I would think it’s important that the dr reviews her, and makes sure it’s neither of those other possibilities (or something else entirely).

I wouldn’t recommend stopping the Nexium without talking to your doctor first, and since you are considering whether an appt with a gastroenterologist would be worthwhile, then I would have to say trust your instincts. If they are telling you it is time for a specialist to have a look at her, then I would say it’s time. Things are obviously not going well yet, and that is reason enough to see one in my opinion. Wanting answers for your daughter doesn’t make you a paranoid mother; I think it makes you a good mum!! You want her to be more comfortable, and want her to sleep (for her sake as well as your own), and in my opinion, that’s just being a good mum. I take it you have had lots of people offering their opinions on that topic, for you to feel like that, or is it just because you are second guessing yourself because it’s so easy to lose confidence in ourselves when we do nothing but question ourselves all the time?

We saw a paed gastro when my son was only a couple of months old, if that helps, and I found it great to have their perspective. There are lots of different ways of treating reflux, and lots of different issues to consider. It makes sense that a paed gastro would be well versed in those, and may be able to add an entirely different perspective.

Perhaps if it is the Nexium that is causing her problems at night, then they may be able to find a different medication that is more suitable. I wanted to mention too, that Nexium, like other medications of its type, must not be crushed as it can lose effectiveness. I know it isn’t easy giving medication to a toddler, but there may be other options. What other medications have you used, and did they have a similar effect?

Have food sensitivities ever been considered? I am just wondering as her symptoms of reflux, sleep issues, abdo cramps and diarrhoea would also fit with food allergies or intolerances, and that is something else that is common with reflux children (especially cows milk protein sensitivity) Have you ever wondered whether food is causing any problems? Does it run in the family in any way?

I hope that helps and I hope you find the answers she needs. I also hope you all start to get more sleep, as it’s very precious. I don’t think I’ll ever take sleep for granted, ever again. 

Glenda

[mosaic]

Thank you for replying to my questions. Sometimes i do think i am just second guessing myself i never know if what i am doing is right? She has been waking from the cramps for a while now even before she was on nexium but more now she is on it. If that makes sense. She has had abdominal spasms as the doctor said and she was on donnalix for a while, that worked but then she had the sour breath. We had her tested for lactose intolerance when she about 3 months old or so. It is so hard to remember dates when you haven't had much sleep. The test came back fine. Since then i had changed her formula a couple of times thinking it was that as well. The dr tells us that it isn't food related but i never know what to believe that is why i have been thinking about taking her to a gastro.
We don't have any food intolerances in the family, so that is probably why the dr says that it isn't food related.
I have stopped the nexium at the moment and will be taking her to the dr tomorrow as now she has the flu!! I will be asking the dr again about the nexium as i haven't read of any other child on it they are all on losec.
I don't think she is constipated she goes once or twice a day and is really good with drinking her water.
Also i haven't read anything about other children having sour smelling breath. Is this common for refluxers?
I am going to make an appointment with a paed gastro and trust my instincts like you said. Once again thankyou for your reply.:)

[RISA]

Hi Mosaic,

Yikes, sorry to hear she has the flu now. Not great timing, especially as any illness can cause reflux to flare, and for the moment, it can make it even harder to work out what is what!! I hope she isn’t too bad and she recovers from that fairly quickly. and yes, sour breath is very common with refluxers. There are so many different signs and symptoms they can have, but that is commonly reported.

Nexium isn’t used as commonly as Losec or Zoton, but it is still used in a lot of children. From what I can gather, it tends to be the one doctors save til last as it is often the most effective (even though it’s in the same class as the others). That doesn’t’ mean it will always suit every child, and perhaps a trial of a different medication might help. It’s possible she’ll do better on a different one. It is really important not to crush the granules in it though, as effectiveness will be lost.

I think, especially given you have wondered about the possibility of her formula causing problems already, that food intolerances would be worth discussing with a paed gastro. Cow’s milk often causes problems (one recent study quoted 40% of reflux babies), but generally it’s not the lactose that causes it, but the protein component. To make it even more complicated, the protein in cows milk is very similar to the protein in soy, so some children can have problems with both. (much easier to put it to a paed gastro and let them work it out) :)

I can remember being in a similar place emotionally, to where you are now, and while it is confusing and a minefield to work out, I hope it helps to know that life really does get better at some point (we just can’t predict when that will be). You will eventually figure out what works best for her, you will find the answers she needs and it all gets much easier. Just continue to do what you are doing- asking questions, doing research and pushing for answers. Good on you for doing all that, and I think it’s great you are able to trust your instincts enough to do what you think is best for your child,

Hope that helps
Glenda

[mosaic]

Thank you Glenda for responding so quickly. It is great to know that there is someone i can talk to that understands that i am not making things up as my daughter is so perfect throughout the day.

The doctor has taken her off the nexium and has put her back on Zantac for a while to see how she goes. He said we could also reduce the dose of nexium but we would let her tummy settle a bit. He also said if she gets the tummy pains back she can have donnalix but it is unlikely as she isn't on the nexium. I am in the process in getting her an appoiintment to see a paed gastro and i really want to thank you for all your help in answering my questions.:angel:

[RISA]

Hi,
No worries, and thanks for letting me know. I hope it helps her, and I'm glad you are going to see a paed gastro too,

Glenda

[mosaic]

Hi Glenda, just an update. Took her to the doctor and he has taken her off nexium and put her back on zantac. I also needed a referral to the children's hospital and he said that there is no such thing as a paed gastro and u just have to see a gastro. He said to just take her to a paed. I think i am going to have to see another doctor!!

[RISA]

Hi,
Thanks for letting me know how you went, though I have to admit, I am confused by what your doctor said.
Do you perhaps live in an area that is small and no paed gastro's go out there? I guess they are more likely to be found in larger cities, so maybe that is what he meant?

If you are in a city and there are paed gastros, then I have no idea what he meant. Would it help if you perhaps got a list of paed gastros in your area and discussed it with your doctor? or do you prefer to talk to someone else?

I hope you manage to get it sorted quickly and you can get the help for your daughter that she needs.

Glenda