Reflux medicine not working, what now?

[FlingonTheValiant]

Me again.

DS is 21 weeks and was diagnosed with reflux 3 weeks ago. Also suspected of having dairy intolerance.

He has ranitidine and domperidone, and hydrolysed protein formula for top ups if we want to give it to him.

The first week we tried the medicine it seemed to help, but then it tailed off again. The GP adjusted the dose on Tuesday, but it's just not helping. He's back to arching off the breast and screaming after a few mouthfuls.

The GP told me on Tuesday that there isn't any stronger medicine, and that he doesn't want to increase the dose, so what do we do now? It's killing me to see him in pain when he feeds.

And really dispiritingly he doesn't scream as much if we do give him the hydrolysed formula :( I've been dairy free since Monday, so I guess that might still improve though. But would dairy intolerance make him scream so quickly? I thought that was what gave him wind and bad gas and constipation (9 days and counting, which is also worrying me).

I just don't know what to do, it's really getting me down, and I feel so bad for him :(

What do I do now? Is there anything that they can do?

Argh - sorry to hear this. My daughter had bad reflux and the Doctor seems to be forgetting to mention omeprazole (Losec mups). That is what my daughter was put on after ranitadine didn't work for her. It was miserable. I didn't find the domperidone did much for her (supposed to increase stomach motility I think so the milk leaves stomach quicker and they don't puke as much). The main thing bothering her was the acid.

She was formula fed from 4 weeks and she also has a dairy intolerance - cow's milk protein. She would scream and arch and go red, pull her legs up and feeds would take an hour and it was horrid to watch! She was put onto neocate at 9 weeks (when diagnosed by private paed as GP said it was "just colic"/normal. Clearly not) and she became a different baby after that. Then she improved even more with the omeprazole. It's actually a drug given to adults for acid reflux too and comes in tablets which you have to dissolve in water and syringe feed. Our does was 1ml per kilo of body weight. So definitely worth asking the doctor about as it was the only think that did the trick for her (and the neocate).

Her intolerance takes a few weeks to show up so when I tried her on normal formula or cow's milk at around 11 months she seemed fine for a few weeks and then the diarrhoea and sporadic vomiting started again! So it could take a few weeks to get it all out of your system. Obviously you are BF so it's a bit different to just giving her neocate but hopefully the lack of dairy will show soon. Good luck!

Ps perhaps also try and get referred to a paed dietician or at least a paed as they obviously will have more specialist knowledge of this area and will give you a plan for weaning - the four main allergens are diary, wheat, eggs and soya apparently and if your son may have a dairy intolerance then it is often recommended to introduce these things carefully and check for reactions. We were pretty much left to our own devices with no advice re weaning but I have read a lot about it and also had a paed dietician friend so she helped and I mainly didn't introduce much dairy at first although she seems to tolerate a bit of cheese - probably because it is already broken down more - and soya yoghurts, but won't tolerate her milk in the morning and night which is soya or dairy so at 15 months is still on the neocate.

Thanks kingsroadie, I might try to see a different doctor if I can then.

The last one I saw was really dismissive of it because DS doesn't vomit, he just screams in pain. He only renewed the prescriptions because they'd been done initially by a paediatrician.

The GPs kept telling me it was colic, and that I shouldn't worry as it would pass at 3-4 months. They seem to have forgotten that, as he's basically 5 months and still suffering, and they keep saying they think it's colic!

I'll definitely ask about omeprazole then. Thanks very much!

Thanks for that last advice Kingsroadie, I'll see what I can manage re a dietician. I suspect it'll be mumsnet getting me through, judging by how helpful they've been so far!

It's balls - they don't have to vomit - what a silly man. They can have silent reflux - as well you will know! It's miserable for them and for you - I feel your pain. (and tbh colic is usually something else, not just "colic"). If you can't get a referral I am sure you will be able to manage with advice on here and google re weaning etc. Basically introduce the allergens one at a time with four or so days between them to check for any immediate reaction. (although with my daughter both soya and cow's milk seem to take about 2 weeks to show up so if that is the case with you, could leave it 2 weeks between them). She has no probs with wheat or eggs btw. And we saw our paed dietician on Friday and he said 60% of babies with cow's milk protein intolerance also have soya, as seems to be the case with her (although as I said she can tolerate small amounts of the more broken down proteins in normal cheese and soya yoghurt. And she does occasionally have a normal yoghurt too). Hope this all helps a bit.

Press for a referral to a paediatric gastro specialist. There are stronger meds - dd was on 15 mg lansoprazole. Most gps and a fair few non-specialist paeds are reluctant to prescribe at a level high enough to do the trick properly. And there are different formulas out there - if you are on nutramigen then it is still made from cows milk and your dc may be one of the babies who are so sensitive that they still react. keep up with cutting out all dairy from your diet and cut soya out too as this can trigger cmp allergic/intolerant babies. it can take 4 weeks for all dairy/soya to flush out of your system, so you should see more of an improvement as the weeks go on. good luck. i know how horrid it is xx

My dd 5wks is on the same as yours op and up untill this week was effective but now less so,she has silent reflux i presume as not sick much but i feel the meds need to be increased or changed,she often finds feeding painfull and although sleeps ok at night is awake most of the day and is miserable and uncomfortable for most of the time she is awake,squirming and grimacing and sticking out her foamy tongue,it is awafull to see for sure.I am seeing paeds for first time on Wed so i will let you know cos like you i am getting my support from mn only

Stick with the dairy free - it can take two weeks to see results and has really helped us after trying gaviscon and ranitidine to no avail. It might not be the dairy, but it's worth trying to rule it out. It could also be lactose overload, which can present similarly to dairy intolerance. There's loads of info if you google it.