I am very confused about this and was wondering if anyone would be kind enough to explain it to me!

There seems to be a few of you whose kids are fine as long as the medication is right, they are not sick/teething and their diet is free from the foods you have identified as problem foods (e.g. gluten, soy, dairy etc, as well as individual foods such as tomatoes, chocolate etc). Is this right, or am I generalising too much?

Anyway, my thinking is, if your baby/child has to have medication (right dose, right medicine etc) in order to be ok, then surely there must be something else that is wrong that hasn't been identified (another food issue or maybe something wrong in their bodies)? Because, if all causes had been identified & addressed, I would’ve thought that there shouldn't be any need to medicate?

I am probably missing something really obvious right?!

Are there any of you out there that fall into this category (your baby/child is fine as long as meds & diet is right), that hasn’t had any testing done to see what’s going inside their bodies? Maybe in some cases it is purely anatomical (e.g immaturity of the valve or hiatus hernia..) so not diet related at all..
Or have you all had these tests done?

Do people think it is better to try the elimination diet thing with different food groups (e.g. gluten, soy) first, then if no luck, get some testing done after that?
We have just begun Jacob on a GF trial. I just worry that we could end up spending months trialling different foods, when the sole cause of his reflux could be something going on inside him.

Any feedback would be much appreciated!

Yes - sometimes when the food etc is right you medicate to treat the reflux, that is the problem . The food issues often make the reflux worse, which is why it is so important to get them sorted.

Katey is going for further testing as she is on a shocking dose of Losec and she has a terrible time of it if one dose is missed ... and really, she should of grown out of her reflux by now according to most medical experts we have seen. Teh other tests we have had done are just to rule out structual abnormalities.

Believe me, I had no idea of the impact of different foods on her until we did some eliminating and saw an immunologist and a nutritionist.

I would be another who falls into that catagory. At first I knew Elise had reflux because I had another child who had suffered and I recognised the symptoms. Soon after that I found this board and the website and my long journey of trying to help my daughter started.
Everything I have discovered I have done myself through extensive reading, support from people here and trial and error. The reason for this is that I have not found help through the medical professionals. No one has ever offered to do any tests.

Recently I found a gp who has tested for gluten sensitivity and I may be able to get more clear answers with her help.

In my experience with reflux and food intolerance there are no easy answers sorry.
Claire

Personally I wonder if a lot of it is a vicious circle.

I agree with you that in a very young child it would be reasonable to assume that if a child is on a limited diet, but is still having reflux symptoms there is obviously another contributor (either another food or structurally or immaturity or the medicine itself).

I think what people forget is that reflux is a symptom and that the medicine is not a cure. It is just a shame in my opinion that drugs are given so readily and that parents are not supported earlier to make dietary changes (before exhaustion hits).

What are the statistics on a child with reflux DISEASE (not reflux) actually being immaturity? Roz? (So they never have any other problems after a certain time, no pain, no reflux, no bowel issues etc).

For the reflux that is the symptom of intolerances and allergies, I believe that IF, midwifes or Drs in the early weeks were to suggest changes to the mother's diet (e.g. take out milk in the first instance) instead of medicine perhaps it would be more simple. And if this was done straight away (within a week or so of birth), I wonder what the outcome would be?

Unfortunately most don't suggest dietary changes and by the time most parents come here (or other support groups) they are at their wits end and their baby's tummies are very irritated (myself included).

By the time the child is a toddler like Clares and Viviennes I think it gets A LOT more complicated.

Even if it started out as a simple intolerance after a year of irritation there isn't going to be a quick fix. I personally think if there is NO structural problems (which is probably quite unlikely) it is just going to be months and months and months (perhaps even a year) of the blandest diet known to man.

I think one thing that we are very quick to do (which aggravates the situation) is to trial withdrawn foods after a month or so (instead of waiting for the reflux to settle) - I was guilty of this at one stage.

I think we also have to consider that it could be the medicines. We have had at least one person on this board whose child made a marvellous recovery once the cocktail of drugs were stopped!

It is all very interesting and no doubt we will know more as time goes on. I do think it is good to question.

Kelly

so can a baby be litteraly born with an allergy already?

Nope, they are born with the genetic predisposition/structure to develop allergies but if you avoid all exposure to potential triggers you can short circuit it so that they don't develop. When we saw Dr Liang antenatally he said the stats on subsequent siblings of children with allergies developing allergies is around 80% and the only way to avoid it is to be on a restricted diet during 3rd tri and when breastfeeding, and to use the hydrolysed formulas where required.
I find myself wishing I had taken him a bit more seriously - I thought because dairy in my breastmilk didn't affect DD#1 until 4 mths or so that the twins would be fine, but it seems at least one of them has already developed a milk protein allergy, we're waiting on the RAST results, and I can't help wondering if I had been dairy free from day one would we have been able to avoid it?

I will jump in although at work so can't post for long. I think Kelly may be referring to my daughter Alla. Alla was a terribly miserable baby. I was almost at my wits end - she was vomiting all the time and hardly slept during the day at all (a little better at night). She was extremely colicky couldn't be put down and cried from 4 in the afternoon until about 9pm when she crashed which was very difficult with a 2yo as well. We went straight on to Losec but also tried Zantac as the losec seemed to upset her more. Zantac was awful also and we went back to losec. Tried everything from 5mg/day to 20mg/day and she was only about 8 weeks old. Couldn't get a paed appointment for 3 mths public or private. I was almost beside myself.
Then we spent a weekend trialling different formulas thickening, unthickening with various things e.t.c.(much to my GPs horror as not a very scientific experiment)but on the Sunday Night she had three bottles of Soya formula. Didn't vomit at all and the rash on her face (previously thought to be hormone rash) disappeared overnight. GP still didn't believe it was a dairy reaction!!
We referred ourselves to Auckland Allergy Clinic. She is now on Neocate formula. Within 4 weeks of being on Neocate she was off all reflux medication and has stayed off it. She is a happy wee girl. Still spilly but I guess now what you would call a happy chucker. Hoping she'll grow out of that shortly before the carpets totally destroyed!!

Could luck to all sufferring with reflux / allergies - it is sooo frustrating

That is such an interesting story Patrice. I can see now how things have gone form bad to worse with me. I was BF and went dairy free and kind of had tunnel vision with that and I ate anything that was dairy free and I really didn't like soy milk so I drank hot lemon and barley and heaps of it. Well imagine all the gluten that was going through the system even through what I was drinking! (not to mention the salicylates ) I don't think it was a surprise that her test for gluten was so high.

I think the key to your success was getting on the neocate from really young. I had to fight tooth and nail to get it at 11 months.

Man I so need a decent pead. might be time to fork out some money
CLaire

Your's is a great story Patrice! But I also think that maybe your child just had a dairy issue and not reflux - if it were reflux then the drugs probably would of worked and the change to soys wouldn't of been so dramatic IYKWIM.

It is all very interesting and complicated. I was thinking about the m/w or GP considering something else for Katey's reflux but since it didn't appear until she was 10 weeks old the m/w wasn't about. How can you have 10 weeks of 'good' baby and then get reflux? Weird isn't it. We have trialled dropping the Losec dosage along with keep her diet clean. We are pretty good at keeping her within her limitation, and don't challenge her much at all as we don't see the point of rushing things. But every unsuccessful Losec drop has seen us wishing we hadn't of been so hopeful that it was going to work. She has been on a diet free of dairy, soya, gluten and on a low salicylates for many months now and we haven't seen much change of her symptoms.

The only reason we are considering surgery is because it is another mechanisim to make her life easier. Should there be a slip up and she eats the wrong thing or (God forbid) we forget to give her a dose of Losec or she gets a tummy bug and vomits her meds back up or whatever ... it doesn't then ruin everyone's life completely for a week. It is by no means being looked at by a miracle cure, but it might ease the load and we might even get to lower her Losec dose which would be a good thing in my mind.

Hi Viv

Don't get me wrong - I think we are very lucky. I read all the posts on here regularly to remind myslef how good it is now and how terible it must be for you all.
I have a friend who's little girl has reflux but no apparant allergies to anything so strongly believe there are two issues. One being reflux unrelated to allergies and another being allergies that cause relux as a symptom.
We had the allergies with reflux as a symptom. Solve the allergy and we solved the reflux. In hindsight the losec and zantac were probably working but Alla was way to little to tell where her pain was and a lot of her dairy reaction is in her bowels (spasms, constipation e.t.c.)
Some of you ladies appear to have both to deal with i.e. allergies that make the reflux much worse but reflux none the less even when the diet is controlled. Must be very frustrating for you.
I think getting on to her allergy early was a real key for us. We are introducing soy at the moment in yoghurt form and so far so good. She is also having toast and Mother Earth Fruit bars with no reaction to the gluten so I have my fingers crossed that dairy may be the only issue we have. Having said that Emma reacts to eggs so we will stay away from them for quite awhile.
I would have done anything to improve Allas pain when she was a sick little baby and when we finally saw a paed DH was going to beg for them to do an internal scan as he was sure there was something physically wrong with her that surgery must be able to fix. So much as seeing your babies go through surgery must be hell I can well sympathise with why you would take that route. Seeing them healthy and happy is just such a joy.

Also Viv - saw Jorja on the poster at Life Care Pharmacy - she is gorgeous. Funny but i thought ohh I know her and I don't really only by reading threads on here. (when I should be working Oops!)

This is all very confusing - thanks for the post, the responses so far are helpful. We are just really starting out on the path to work out intolerances etc - hopefully we won't have to go down the path too far before Anneke grows out of all this - I've got all my fingers and toes crossed for that...

So far what we are finding is that the GP doesn't really know a great deal and I feel like I'm doing all the work and self diagnosing and then telling her and she agrees. Not sure if that is very good. She has said she'll refer us to a paediatrician for RAST testing in the new year if we're still having problems.

With the elimination diet (mine as I'm breastfeeding) - I first tried just getting rid of dairy but didn't notice an improvement. But of course while I was dairy free that time I started drinking soy milk. So the next time I was much more desperate so cut out dairy, soy plus other common allergens/colic causing foods like egg, nuts, chocolate etc. and tried not to eat new things (my hubby was good at monitoring that!) and then tried reintroducing one by one. That was when we started seeing more clearly the effects - but of course it is all still quite subjective. So for us it has been best doing multiple foods.

My current theory (subject to change!) is that she's susceptible to food intolerances (or allergies) for some reason and that as she's been exposed to various things in my breast milk they've sensitised her and gradually damaged her digestive tract and perhaps caused the reflux (in the very early weeks she seemed OK). But then again maybe I'm just a paranoid mother! There don't seem to be any clear answers.

Clarice - I can't say enough how great it was seeing Allen Liang in private practise. Expensive, but I would recommend it to anyone struggling with allergies coz the public waiting lists are disgusting. My DD was an inpatient at Starship and still couldn't get a public immunology appt.

Hi Patrice, good to hear that all is going well (it wasn't you I was thinking of but someone from a year or so ago).

I would disagree with Viv and agree with Patrice in that reflux is a symptom (or can be a symptom) of allergies and intolerances (as well as immaturity or structural problems). The medication that most of us use e.g. losec, zantac does not cure reflux but helps with what reflux causes e.g. acid burning etc.

It will not fix the problem, one must FIND the problem. If the problem is immaturity (which I suspect is a VERY small number) then it should be quite short lived. If it is foods then eliminations must be made. If it is structural then surgery may be the answer.

Viv, it is interesting that you say she only developed reflux at 10 weeks. Very interesting. Wouldn't you assume then that it can't be structural or immaturity because it would have started a lot earlier? Anything significant around 10 weeks e.g. going onto formula?

Anneke's Mum, unfortunately for those of us with children with intolerances (as mine have) there is no cure. The information I have been given is that intolerances are not outgrown but allergies can be.

An intolerance from what I can understand is either the gut or the liver's inability to process that food/foods. Roz will know the 'medical' talk for that!

There is still not enough knowledge out there in the medical profession. The medical profession seem fixated on giving pills instead of trying to find the cause (in my opinion and experience).

Very frustrating, and if I had a fourth I would be interested to see what would happen if I made major changes at the end of pregrancy and whilst breastfeeding. But with all of them getting worse each time I don't think I have the energy (or sanity)!

Good luck all.

Kelly

Sorry - should of made myself clearer in my above post - reflux being a symptom of Patrice's DD's allergy or intolerance and once it was removed there were no other causes for reflux. Make sense? Not the case for us.

Nothing changed at 10 weeks for Katey, she was still 100% breastfed. No solids. I hadn't changed my diet. It is all very well to discuss such issues acedemically and in retrospect but to be honest, and like I have already said, if surgery gives us all a better quality of life then hey, I am all for it! Katey might not have anything structual wrong with her, but if she lies down now (coming up to 2 years of age) and it plain as day that acid is washing up from her stomach to aggrevate her already raw throat then wouldn't you want to investigate surgery as well? Surely if there was nothing structurally wrong with her then she wouldn't have this happening to her?

oh all interesting.

yes, i think there was crossed wires there kelly, you said exactly what i think viv did say :-). def sounded to me like the diagnosis wasnt reflux but allergies with reflux as a symptom.

so if my boys had reflux within a week or so of birth does that mean it must have been structural? (which is what the pead said seeing as the boys were prem)

Darney, that is interesting. Did your daughter's have dairy intolerances or allergies? I am assuming that it was intolerances and this to me would make more sense.

From what I can work out children with intolerances are not as easy to 'cure' as the children with just allergies. Children with allergies (and no intolerances because of course you can have both!) have strong reactions to and also to the withdrawal.

The flip side to the coin is that the intolerant child can be intolerant to something but irritated by EVERYTHING!

So, whilst your son's main issue could be milk, he could still get 'irritated' by other foods because of his gut/liver and the way that it processes the foods. Does any of that make sense?

Vivianne would surgery work if the issue isn't structural? How would surgery fix 'it' if it doesn't fix the actual problem? Sorry I don't understand that perhaps I am being daft.

Of course the problem could be structural (but could it if it didn't show up straight away?). Are children with structural problems sensitive in general to foods? Is it worth questioning whether her problem could be more about the way the gut works or liver than the structure of the gut?

I like to think of as many possibilities as I can and then it is bound to be one of them!

Kelly

No, surgery won't work if the issue isn't structual which is why we will be going to Starship for three days of hell and testing before we commit to surgery. Two days off Losec before we go in too , so not looking forward to it! What I was meaning before is this; is it normal for an almost 2 year old to have acid washing back up into their oesophagus when they lie down? Or should the scphincter muscule be mature enough by then to be closed when the kid is lying down so there isn't backwash? Most specialists we have seen suggested that she should have a mature scphincter muscule by now and if it hasn't corrected itself by now then will it? The other questions is, of course, why does she have so much stomach acid? That I don't know the answer to and if I did I would fix it of course. If we could fix that problem, then we wouldn't need the surgery, but since we can't find the solution that one then surgery is a good option as it will help to fix one of the issues causing her (and us!) so much pain. I think we have been downt he food intolerance side of thing almost all the way to the bottom, and if she is on a good diet and Losec dose then she is good. But when she isn't we are living in immediate hell, so why is that? Would LOVE to know. And would like to get her sorted out as much as we can before it starts to really impact on her life (that is before she goes to school).

So, if it was structural, how can diet or drugs make any difference? Does that make sense? How can she improve with diet if it was structural? Do you get what I mean?

Perhaps it is more about her body's inability to process the foods rather than the 'cap on the lid'?

Can Losec hinder the body's ability to break down the foods? If Losec is an inhibitor, does the body try to 'right it' by making more acid in order to process it?

Could it be that when she comes off the Losec her body naturally continues to make the same amount of acid (more than the normal child) until it realises that it doesn't have to anymore (or can it 'rewire' at all?)

If Losec allows proteins to leak into her system (doesn't it?) could this not sensitise them even more to foods?

It sounds like a vicious circle does it? You need Losec, but then Losec could be causing some of the issues and around you go again.

Thinking out loud........Perhaps Roz has some answers.

Kelly