Anyones baby have SEVERE reflux? Wtf did you do?

[xJune88]

16 week old baby I'm at the end of my tether been to doctors roughly 10 times, hospital, health visitor. Fed up. Shes been on gaviscon, ranitidine max dose, omeprazole. Nothing is working I'm sick and tired of having a screaming baby all day who is clearly in agony and nobody listening to me. I'm about to go private and pay £250 just so somebody will listen. I feel like a shit parent and it is ruining mine and my daughters life. How on earth did people get past this?? Any miracle cures? And I dont want sit baby upright, smaller feeds.. I've tried literally all of that nonsense. Please somebody tell me it gets better. Her poor throat must be burnt out. Its turned into silent reflux too so much worse :(

Wouldn't try a soya formula because very similar proteins. Lactose free formula like Aptamil seems to be less problematic to my DS who seems to have lactose intolerance and mild CMPA.

Would recommend going private if you can find someone who usually works in the NHS because they can request that GPs prescribe the specialist formulas.

Another vote for CMPA and soya. My lb was exactly the same, dr's said it would be that as he didn't have eczema etc so I ended up taking him off meds and eliminating diary and soy myself - 24-48 hrs later he was a different child. x

Completely dairy free milks include Neocate, SMA Alfamino and Puramino. They might want you to try a hydrolysed formula first (based on cow’s milk but with the protein broken down). These are the milks like Nutramigen.

You don’t need a script to buy them, but they are very expensive; when DD was on Alfamino three years ago it was about £37 a small tin. You can see now why GPs can be reluctant to prescribe it.... however, I am guessing that if you tried it and it made a difference it would be hard for the GP to refuse a script (subject to local prescribing rules).

Carobel milk thickened may help the milk stay down too!

My dd had silent reflux which actually took drs so long to diagnose and finally treat because she didn't lose weight.
The only time she didn't cry was when I was feeding her, and having had no experience of reflux I genuinely felt like I was going insane and losing grip on reality due to lack of sleep for so many months.
I really do feel your pain. My dd was put on special formula which I can't recall the name of now and ranitidine, they did help a little as did propping up the end of her cot to raise her head.
It really only got better when she started on solids.

My dcs were breastfed for ages, but with my first when I was introducing food (we did it earlier then!), I did try different formulas - aptamil was really bad. I think I ended up with nanny and used that, and went onto goats milk later. They couldn't tolerate soya milk.

We also got prescribed some formula - can't remember what it was called and some of the thickener.

I'm so sorry you're going through this -it is horrendous I know. Have you tried a sling for inbetween times? My dcs loved being carried around in a sling and it enabled me to get on with things (I had my first 4 very close together).

OP you are not failing her. It's hell. It really is. We got through it by:
small feeds often
Hipp Organic
Infacol as well as Ranitidine and gaviscon
Always keep baby upright. He slept in his buggy, strapped in, upright.
Baby massage helped a lot. It taught me how to ease stomach cramps and painful wind. Being able to ease out the wind is good.
Early weaning. By the time he was your DD's age he had baby rice and then we added pureed pear, butternut squash, pureed carrots etc. It helped a bit.
But it really was exhausting and demoralising. It will pass. It may not pass soon though, so you do have to learn to stop judging yourself over it. It's such a challenging problem to have - for you and your baby.

Thankyou all again. Unfortunately she hates slings/carriers and tummy time strangely but loves been sat up and carried upright. Will give it a couple of days and be ringing back to try some of this formula then. We can't go on like this. looks like the prescribed formula is the way forward God knows why they haven't given me this already. Shes such a happy baby who is just been destroyed by this and so am I! Makes me question my sanity and at 3 till 5 am. Thought I had postnatal depression or PTSD from her birth but genuinely think its reflux that's causing all our problems! Am I worth going to the doctor again or just going private to sort this?

@xJune88 can you get to Sheffield? www.paediatricgastroenterologist.co.uk/ this one works with Neil Shah at the Portland who we saw. He works twice a week at Sheffield. If you don't get anywhere NHS keep him in mind.

Go back to GP, you don't need to go private. GP's are not normally really knowledgeable in this area but I've found are more than happy to take on board the info you have and go from there. We were only referred to peads once I had done the elimination myself and these are actually the guidelines. If you search CMPA clinical guidelines you'll find the algorithm for diagnosis - elimination diet being theainstay. The GP should offer a trial of special formula as part of potential diagnosis. Alternatively you can buy neocate formula it is expensive but maybe worth it for a short term elimination diet to rule out CMPI & soya. Fingers crossed for you x

Also just to add I had PND as a result of the reflux and all the associated things like lack of sleep, feeling like I was poisoning my baby etc and just to say that you do get through it, it's really hard but you do get there so hold on in there, your doing a great job xx

@sib09 Thankyou sorry it effected you so much too. Shes had her immunizations this morning and I've asked about referral been made at reception. It hasnt been made yet. I bought some aptamil pepti last night it's coming tomorrow it cost 32pound! But I'm guna try it. Dont want to take another gp appointment when they do naff all. Gp is going to ring me on Monday thats the earliest phone appointment to discuss next steps if formula works I will tell gp and ask her to prescribe it or a similar one. If no joy by monday 10000% going private. Had enough x

Just wondering how you've been getting on with the Aptamil Pepti? We're in the same boat!

Domperidone?

I sympathise as mine had this and would end up in hospital with apnoea from choking. He screamed all day and all night. We tried Losec and numerous other drugs but he finally grew out of it about 21 months. He is primary age now and it is gone but he has sensitive stomach, travel sickness and extreme food aversion. He was on smooth baby food till 2/3. Hope things get better soon it is awful to go through.