Silent Reflux, out of options

[PL2021]

DD has been suffering with silent reflux for many weeks now. We have been through what I feel is every option of treatment available, and nothing is working for her. First she was on Gaviscon which worked for a short while and then stopped. Then she was put on Omeprazole which did really help the Silent Reflux, however wreaked havoc with her tummy and caused major constipation and tummy ache and we had even worse crying for days upon end and ended up at an out of hours GP for some lactulose to help clear her out, so we discontinued the omep as it was awful to see her in so much pain. The GP suggested using just Carobel alone, so that is what we have done for the past week. It is helping the Silent Reflux in terms of stopping as much pain from the acid, as we don't seem to have as much screaming anymore. However she is still bringing up acid in burps and whilst sleeping as she will grimace and let out little cries. Whilst this is still a huge improvement to before, the Carobel is now also wreaking havoc with the other end in a different way. Her stools started becoming very yellow and loose, and now she has started going in the middle of the night which she has never done before. I can only assume it is from the Carobel and it is causing slight Diarrhoea. The stools do have some lumpy bits (sorry tmi) but they are mostly very loose and in very large amounts. She also has been very restless during the days not getting much sleep.

I am totally at my wits end and out of options. Does anyone have any other suggestions? Is there something that I haven't tried that I could?

We do all of the holding upright after a feed and raising the head of the cot etc etc, but she will still do her acid burps 2/3/4 hours after a feed

Poor little love. Have you tried a milk hats suitable for babies with CMPA?

@PanicBuyingSprouts No we haven't tried that yet, I have mentioned that to numerous GPs but none of them really seem too interested in that option

That's a bit weird. Do the symptoms in the link sound like what might be going on?

Omeprazole was the only thing that worked for dts but it did did cause massive constipation issues. We got round it by using infacol which gave them diarreah so the two together worked.

Carobel won't stop the pain from the acid in its own.

I think you need to have another look into CMPA and allergies. Are you breast or bottle feeding?

We are bottle feeding. The Dr explained to us that the reflux is all physical due to the oesophagus not being developed properly and therefore allowing milk/acid to come up. He said that using the Carobel would thicken the milk and therefore prevent anything from coming back up. I also didn't/don't feel like it will solve the problem alone, and although it is helping, she clearly is still having some silent reflux. There may be less milk coming up now but she's still having the acid rise (although not as bothersome for her as she'll just pull a few faces and let out an occasional cry, oppose to the constant crying we had previously)

She doesnt have any other symptoms like projectile vomiting, rashes, eczema etc which is why I think the GPs aren't too bothered about looking in to allergies. She has also been gaining weight really well up until the last 10 days when the constipation started, and now the Diarrhoea, and I personally think a mixture of the 2 is what has caused her weight gain to now slow down.

We intend to stop Carobel today to see if her stools go back to normal, but I'm apprehensive about her reflux then worsening again. It's a viscious cycle. We improve one problem whilst creating another with all of these medications/thickeners etc

I've got CMPA and dot have rashes or eczema. I think your GP may he confusing non-ige symptoms with ige symptoms.

I'd read the article I posted from Allergy UK and see if your LO has any of the non-ige symptoms.

I agree with trying her without dairy, so a CMPI formula or cut out dairy and soya completely if you’re breastfeeding for 2 weeks and be really strict with it.
My DC needed Domperidone in addition to cutting out dairy and Omeprazole and Ranitadine. It’s always the Domperidone that makes the biggest difference for my DC though when we try to change the doses of her meds.
I would definitely try no dairy first though as Domperidone has some side effects.
My DC didn’t have lots of symptoms, but when we cut out the dairy we saw a massive improvement very quickly.

Until I can get in touch with the GP again, would colief drops possibly help her for the time being if she is having an allergy/intolerance to the milk?

Agree it sounds like allergy, or even tongue tie can cause these symptoms. Worth getting her checker for that?
You can buy cmpa milk like similac or alfamino over the counter, it's amazingly expensive but if her symptoms then disappear or improve after a week or two you should be able to get a prescription I think? My friend did this.

100% some kind of intolerance, change the milk and know that it takes around 6weeks to fully clear of lingering cows milk lactose. Colief is an expensive option when you can purchase off the self lactose free formula.
A health visitor can recommend if you cannot get anywhere with the g.p. prescription formula is expensive for the NHS

Have just got off the phone to the out of hours GP. He has prescribed us Nutremagin to try which I mentioned to him because a friend's daughter is on it. Until then he has told me to continue with her formula with Gaviscon and Co Lactose/Colief added to it. I really hope one of these 2 options sorts her out because I'm so stressed out and at the end of my tether

Glad you've got a different milk to try.

Just to add that lactose intolerance is extremely rare in babies although obviously not unheard off. It's much more likely to be an allergy to the protein in the milk rather than the sugar.

Nutramigen saved us.
It tastes absolutely vile, so hopefully your little one will take it.

My ds symptoms stopped literally overnight. His symptoms were:
Silent reflux
Constant feeding
Acid and discomfort after feeding
Bloated tummy
Lots and lots of poopy and smelly nappies
Dry, flaky, rashy skin
Poor sleep
Grunting in sleep
Waking upset

I’d always suspected CMPA but it took a while to convince docs.

Hopefully nutramigen helps you too!

@Yolo773 Did your little one take to the Nutramigen well? I'm really worried she's not going to like it and then refuse to feed even more. She's already stopped gaining weight so the last thing I want is for her to eat even less

If she doesn't like the taste, try adding a couple of drops of proper vanilla essence or some Nesquik.

DD had silent reflux, Boots version of gripe mixture worked amazingly. I really wish I had pushed drs harder on possible CMPA which they dismissed, she still, aged nearly 7yrs, has chronic constipation and milk products definitely make it worse.

Have you tried ranitidine?

@Lamby1234

Have you tried ranitidine?

We also had ranitadine for DS. I've heard it's not prescribed as much for children now though.

How old is your DC? The only thing that really helped DS was ranitadine and weaning at 16 weeks. The GPs all fobbed us off about CMPA but as soon as we weaned him and he was having less formula he was better.

He wad diagnosed with asthma at 3YO. He has had asthma symptoms since he was a baby. The paediatrician who diagnosed his asthma told us he probably had CMPA as a baby when we explained the reflux etc.

Have you tried ranitidine?

I'm not sure that's prescribed for babies anymore.

[quote PL2021]@Yolo773 Did your little one take to the Nutramigen well? I'm really worried she's not going to like it and then refuse to feed even more. She's already stopped gaining weight so the last thing I want is for her to eat even less [/quote]
Yes actually, he took to it well.
Maybe we were lucky. But by the time he got to 11 months he started to refuse it. So that was quite stressful. He started nutramigen around 3 or 4 months old.

As a pp has said you could use vanilla. But I honestly can’t imagine it tasting any better,
But it could make a difference.

Also, I found that using gripe water during night feeds helped enormously too if you haven’t used that already

Hopefully she will be absolutely fine on nutramigen!

@PL2021 My DS has silent reflux but I had no idea. I didn't find this out until he was assessed by a paediatric dietician for being lactose intolerant.
He is on Omeprazole and carobel both of which massively help with the silent reflux symptoms so your LO could possibly have CMPA or lactose intolerance too?
My DS had excessive diarreah to the point the stools scalded the skin around his bottom it was awful, GP prescribed creams, steroid creams, caneston creams, told me to use metanium etc but it wasn't helping and they didn't have a clue so they referred him to paediatrician, they trialled him on CMPA formula for 2 weeks with no improvement at all so they referred me to the dietician!! Straight away she said the acidic stool is a sign of lactose intolerance and since he's been on lactose free formula he's been fine.
Might be worth trialling your on CMPA or lactose free formula yourself and then at least if it makes a difference you know 🤷🏼‍♀️

We asked for Ranitidine but we were told that it has been discontinued... not sure how true that is but that's what they said to us after asking and asking for it.

DD seems to be constipated again now (I think) since stopping the carobel which was giving her Diarrhoea. She's been crying all day and trumping loads but hasn't pooped today and seems to be really uncomfortable again.

I'm keeping everything crossed that she takes well to the Nutramigen because I dont know how much more I can take!

Hi. It does sound like cmpa your little one has and also sounds like she's reacting to carobel. With nutramigen you should start seeing litte improvements over few days. Sometimes it can be a different baby in those few days. Nutramigen is very hydrolysed milk protein so it might work it might not. It takes up to 6 weeks for old formula to leave the little one system so you need to give it time to work. If no improvement then I would suggest amino acid formula. All allergy formula are very thin, therefore I would defo suggest a thickener. Magic mix or thick and easy are other 2 people use if their little one. And also with omeprezol it will get worse before it gets better, its called acid battle. That can take 4-5 weeks. There's is an amazing Facebook group called Main group-CMPA support. You'll get lots of information and advice from there. It's all parents who are going through what you and your little are dealing with. It's been so much help for me for the last year. Good luck xx

The one thing that confuses me is that some bottles she is absolutely fine after, but others she screams bloody murder and is uncomfortable for hours. Is this normal if it is an allergy? Or would she react the same after every single bottle?