Reflux experts - help me out (please)

[BigPigLittlePig]

My 16mo dd has reflux, has had since 2 weeks old. She is on a dairy, soya and egg free diet, Nutramigen AA for milk, and big doses of omeprazole. ALL of this has been deduced or pushed for by me, as rural gp in our village is not exactly au fait with reflux.

Today we had our 1st paeds appt. It was worse than useless. The consultant told me reflux "can't" exist once they're weaned and upright . She could answer none of my Qs. And her advice? Tilt the cot oh, would never have thought of that and stop the omeprazole?!

So I was hoping that some wise MN bods might have more of a clue.

These were my Qs.

Why does she still have reflux symptoms even when on a strict elimination diet?

Is there any danger of the chronic reflux cough causing longer term lung problems?

At times when she is already on the max dose of omeprazole, and the reflux is still not controlled, what can we do?

Sorry to go on, I hope someone wise is able to help

She weighs lots. But is, erm, dumpy? She is stillin 9-12m clothes at 16m

Yep they can develop lung/chest problems with aspiration too.
All that crap refluxing up and oesophagus could end up in lungs. Ds has chronic cough plus asthma.

If it's caused by a cow's milk allergy nutramigen may not be enough - it still contains some cow's milk protein. How much is she having? It may be that she needs Neocate which is totally free of milk protein.

Also, wheat/gluten intolerance often goes hand in hand with a milk allergy. My DD was on an elimination diet excluding, dairy, soy, gluten, banana, potato as they all seemed to make it worse. Her vomiting improved massively once we'd identified this. She was vomiting 20ish times a day once weaned and very much up right! Your paed knows nothing I'm afraid.

Good news is that with careful management and reintroduction of food DD has been reflux free since about a year, and at two now can eat all foods (although dairy still gives her a bit of a funny tummy).

Cannot encourage strongly enough to see a specialist. If you suspect allergy Neil Shah at Great Ormond Street is a world leading specialist in paediatric gastro/allergic problems. Works to the latest evidence and really listens to parents. Saved our sanity after being fobbed off in much the same way you have been.

It's worth saying that if the cause is intolerance/allergy related the omperazole etc. will only help symptoms, not address the problem. Something like ketotofen (sp?) may be what your DD needs to reduce the inflammation in her gut. Only a specialist would know about this though.

I've been where you are, it's miserable, but with the right help it can be a thing of the past so keep going. You're doing an amazing job for your DD.

She's on nutramigen aa, so no cows milk there. It's because we've already eliminated a good few foods that I don't want to start cuttting out more without advice. The paed did quite rightly point out "she's on a very restricted diet, isn't she?"

BigPig, try and put out of your head what the generalist paed said. Much of it will likely be based on prejudices about 'trendy' food allergies and over-anxious parents. I saw one at about 12 weeks when DD was screaming day and night, writhing and arching after every feed, not sleeping more than an hour at a stretch and vomiting 20-30 times per day. I was told to wean her immediately and take her off Nutramigen and put her on cow's milk formula as "everyone thinks their child has an allergy now". Thank goodness I ignored her advice as it turned out DD had a very serious milk allergy and it could have done her serious harm.

I know it's depressing to have a child on such a limited diet (not to mention making meals a hassle!) but I worked round it for more than a year and DD's gut recovered and she became tolerant of the foods cut out with gradual, supervised introduction.

Totally agree any further dietary adaptation should be done with advice, but do seek out one of the specialists suggested and get the advice from them and one of their specialist dieticians. General doctors and dieticians may not give you the latest advice (been there, got the baby vomit stained T shirt!)

Good to hear we're not the only oneswho havestruggled to getuseful advice. Am ok with the cooking thing, been doing that for 14m now so it's become 2nd nature. But good grief I'd love to buy her an icecream at the beach. Will make do with eating it for her for the time being

Tomorrow I will try to convince the gp to refer us to someone in the know

Op did they refer dd?

I remembered something useful!

Get the colic sorted (or is it solved? ) book by an American person. sorry thats not very helpful
I wish I was recommended it earlier so I could have sorted ds out sooner. Thats where I got the info from about 2 types of refluxers but forgot I got it from the book!

I blame pregnancy brain.

it was colic solved

My DD was still on omeprazole at 3, when she suddenly decided she'd had enough medicine for a while and preferred to vomit instead. Thankfully at almost 5, episodes are now few and far between, but absolute bollocks to reflux stopping when they can sit upright - they're just less likely to choke on it, is my experience (with both DC).

We saw Keith Lindley at Great Ormond Street, who had been recommended on MN several times before we were referred. DD had a 24hr probe test which proved severe reflux (which we kind of knew anyway - average 200-250 vomits per day) but crucially, also proved that it wasn't overly acidic, which was a very pleasant surprise for everyone. DD has a reflux-related cough, worse at night, and associated allergies, but is on an antihistamine for that. Mr Lindley told us that if the reflux was acidic, it could be causing cell changes in the oesophagus. If not acidic, then the cough was annoying but not serious, and the reflux was more about interfering with quality of life than serious long-term health effects. (Pretty sure I've remembered correctly, it was a while ago now).

After the 24hr probe, we chose simply to manage the symptoms and not find out the cause, which was the next step via endoscopy. Obviously had the probe shown that damage was being done, we'd have had to do the endoscopy.

I'm fairly sure Mr Lindley also said something about a 95% rule - something like 95% of babies grow out of reflux by 6 months, of the remainder, 95% by 12 months, of the remainder, 95% by 18m, then 95% by 3 years, then 5 years, then you're left with longer-term management of a few.

In our experience that was fairly true - DC1 did improve significantly around her 3rd birthday, DC2 was horrendous at 16m, much improved at 18m so we stopped the omeprazole, etc, and totally reflux-free at just turned 2.

For allergies I'd recommend Dr Adam Fox at St Thomas's/Evelina - maybe a fun midweek trip to London is on the cards .

Good luck, but honestly, it will get better. DS was dairy-free and medicated up to the eyeballs at 16m, fine just a couple of months later and our lives were transformed overnight. Amazing how quickly you take for granted not having to cart around 3 or 4 spare changes of clothes, a bundle of muslins and several packs of wipes!

Update - saw the GP today, who had cancelled the prescription for omeprazole after getting the letter from the paediatrician. He has re prescribed it, and is referring dd to the nearest children's hospital to see a paediatric gastroenterologist

Dd finally picking up again after we had tried on a slightly lower dose of omeprazole with horrid outcome. And waiting to hear from dietitian. All heading the right way

That all sounds positive, BigPig. I hope you get a useful consultation and things continue to improve for your dd.