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

What type of pead did you see?

DS is under a gastro pead for his reflux and allergies (dairy & soy). His reflux got much worse around 15 months so they did a test for coeliac disease. I'm a coeliac and chronic reflux was my main symptom.

Oesophagitis is a long term complication of reflux and not very nice.

Can you ask for another referral?

Yy you need a different opinion from a bettee paed
my ds is nearly 4 and still silent reflux but not as bad as his actual reflux!
Hes fed via peg/feeding tube now.
Where are you?

We're in Somerset.

I work in the hospital, so heard on the grapevine that she mostly does oncology, so clearly not the best to advise.

My 2 year old still has reflux and is on ranitidine.The paed is talking rubbish.

GP could do coeliac test if you suspect this. You could cut out gluten but if it helps you would have to reintroduce it for those tests.

I have never suspected gluten, unlike milk/soya/egg which were all v obvious. Her diet us already so restricted. The one good thing to cone from the appt is that she's referring us back to the dietitian.

Ok totally different perspective I've had problems with reflux and been on omeprazole for long periods (its a bit better atm fingers crossed). So clearly you can have it after weaning!

Out of interest have the diet changes helped? Mine is independent of anything like that I've tried cutting all sorts out to no avail .

Iknow someone who took their child to a paediatric gastroenterologist - maybe check out nearest childrens hospital? The pead role is very general.

Could you take dc private
please Google dr mike Thomson paed gastro
even a telephone consultation would help
he helped my ds a lot!

Thanks for the thoughts. Diet changes made a huge difference, even back when I was bf her. I think I'll end up going down the private route though. Such a shame, if I'd known I'd end up doing that I would have done it months ago!

I really cant recommend dr thomson enough! Hes one Europes best.
He saw my child within 2 days on nhs (it was really hard as gp wouldn't agree bit call and book rang me)
and maxed all of his meds up and saw him every 2 weeks after. He was referred in December I think and in April he got a peg as he was still losing weight and refusing to eat.

Ps it took us 2-3hours to get there but was worth it

Thankyou for the recommendation Isitme. Shall look him up. One of the hurdles has been that dd has gained weight, loads of it. 0.4 to 91st centile. I try to point out that this is because she fed every hour, of every night, for 5 months! The paeds response? "you're a better woman than I"

What he will organise is different tests.
Ph study, barium swallow, endoscope etc
Imo there are 2 types of refluxers
1- over eaters (eat for comfort not realising that's whatsccausing the pain) and gain weight
2- food refusers like ds who realise it hurts to eat and lose weight.

He will know what to do
I also recommend littlerefluxers google them
I was on there for a looooonngg time!

Your DD definitely needs to see a paediatric gastro. As isitme1 says, there are loads more tests that can be done to determine how bad the reflux is. The ultimate thing they could do is a fundoplication, but this is not without some risks for other parts of the digestive system.

It's rubbish that it goes when they're weaned and upright; DS is still on omeprazole at nearly 7 (although admittedly his dose has lowered), and I know children on it at 10. But you sound like you know that already!

Out of interest, what does your GP consider the max dose of omeprazole? My DS was on 30mg per day at 9kg/nearly 2 yo. (I think this is was a supermax dose, to avoid fundoplication.)

How has she been op

She's been fine, thanks for asking - but that's because she's on the medication! Am going to go back to the gp this week and see if they will refer us to a gastro paediatrician. If not, then will go down the private route.

That sounds like a plan; as a healthcare professional I'd say you definitely want to see a Paediatric Gastroenterologist in a Tertiary centre ie children's hospital. Certainly not a district general hospital.

My DS outgrew reflux at age 3, he has the very occasional episode now at 5, but they are very few & far between. Teething & colds were by far the worse triggers for him - could that be an issue for your child?

DS was on 20mg Omeprazole & Domperidine. The next step would have been Ondanestron (anti-sickness drug used for cancer/chemo).

His eating started to recover within about 3-6 months of the vomiting stopping; he has climbed from below the 0.4th centile to between 9th & 25th. So it does get better, but in our case took a long time.

Teething and illness are massive triggers, yep. That was one of my unanswered Qs when we saw the paediatrician - why do things like that make it worse? She has just had 3 premolars come through, and with each of them, the reflux was the worst I have ever seen it; she lost her voice and hardly ate for days. Glad to hear stories of LOs growing out of it though!

Not read all your replies but paed is talking rubbish. DS2 had reflux for first three years of his life and silent reflux ever since. He had a barium meal aged 8 which showed up reflux still very active but not getting as far as his throat.

Go back to GP and request a consultation with a paediatric gastric specialist.

It's all to do with gut sensitivity & cytokines, apparently - the slightest illness can just trigger things. My DS's reflux was horrific when he got teeth, and also over the winter, with the usual winter illnesses. Interestingly, both my DS & his little friend who both had very severe reflux, outgrow the condition when they started wearing age 2-3 clothes (about 90cm height).

We had always been told by the Gastro consultant that the aim was to treat medically in the hope that DS would outgrow it. He eventually did. Surgery was never presented as an option for him.

Hang in there; it is hellish but hopefully things will get better.

Sorry OP - didn't answer your questions. The paeds at DS's hospital (who I thought were very good) said it's not necessarily diet related. It is often a physical problem - a spasm in the gut (I was told the technical terms but it was a few years ago and I've forgotten them.) DS's occurred because his gut was twisted so the food couldn't go down fully. As he grew the intestine untangled itself a bit but still has a kink in it.

You could discover this by your DD having a barium meal and a scan. We were told this was quite unpleasant and invasive, so put it off for years but actually it was fine and DS loved the Dr Who/James Bond style equipment he got to play on to be scanned.

Don't know of any connection between lung problems and reflux. Where did you hear this? (Now I'm fishing for info from you!)

There are several reflux meds which work in different ways. You can have a combination of them. Ranitidine (aka Zantac) was the best for DS. He still threw up daily for years (sorry if that's not what you want to hear) but at least it didn't seem to hurt as much when he did. For a long time he had that in combination with Gaviscon. Other babies I knew who had long term problems were on Domperidone. For some reason he couldn't have this. I forget why now.

It does pass. It's hellish at the time for them and you, but it is at least an illness they grow out of.

Ha the paed we saw said, "well if it's not gone then omeprazole won't help, and really the only option is fundoplication" - trying to scare me off out the door so I'd stop asking Qs perhaps!?

Thankyou all so much for your thoughts and helping answering the Qs - I knew the MN wisdom would be more useful!

BTW it's great that you have got her onto the 90th centile. DS was 0.4th until he was 4 years old (despite being drip fed all night long in doses too small to be chucked up!) Because size does help them outgrow it, so the bigger she is, the sooner she'll pull through.

I am a doctor in grown up medicine

Adults wih reflux can develop scarring/fibrosis in the lungs wih untreated reflux. By my reckoning, I wondered whether the same process could occur in babies - dd has a cracking cough when reflux is bad, but is she coughing because she is protecting her airways (where adults perhaps might not, due to less sensitive airways), or because the acid is getting into her lungs?

Disclaimer: these are all my 3am sleep deprived thoughts and may be total hoo-ey.