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 :(

Formula fed? Try Hipp Organic. Helped us a bit and then it was just time I'm afraid. Though DS does have an allergy to milk now, which I always wondered if that was the problem.

Yes. Keep on the medication make sure it is being adjusted for weight gain regularly.

If formula fed switch up a dairy free formula strong link between the two conditions.

Use a thickener to help keep formula down.

Keep upright most of the time but minimum after feeds.

We also started weaning early on a calorie rich dairy free baby rice.

All the above prescribed by consultant or Dieticians so ask about them.

If not gaining there is also formula that is higher calorie that needs less volume which can help.

IF BF small feeds more regularly & cut out dairy.

Good luck, it is horrid but it sounds like with the medication & a few tweaks you will get there, I found 16 weeks a peak -
We are at 5 months now and feel a bit more in control of it.

Took them to a decent osteopath

I used a sling as much as possible and in the end I did wean early with baby rice - solved it over night. I felt terrible but I was desperate.

I eliminated dairy from my diet and chose a partially hydrolyzed formula for top ups. Reflux was very much a symptom of cow's milk protein allergy.

One of my grandsons had this , and it was hell for for a year , medication helped , being up right helped, and I know it goes against the rules these days sleeping on his tummy on a slope was the only way he would sleep

We were prescribed formula that set in his stomach so he couldn’t sick it back up. It was miraculous went from constantly screaming sicking baby to happy content in no time

Ours was called enfamil AR.

I have been there with twins... horrendous
You need specialist advice so my health visitors referred us
Both ended up on specialist formula

Keep up after feed

Good luck and hang in there

Yes, there were no miracle cures, I’m afraid, but things turned a corner after going dairy-free. And then subsequently after she could sit up. She is still on Lansoprazole and can not tolerate dairy, gluten or soy and a few fruits at 4. But life is totally manageable, if a bit more faffy than the norm, and has been since she was about one.

Have you tried going fairy-free? If she is still struggling after all the meds she either needs an increase in meds if she’s not on the highest dose and/or she needs to go dairy (and potentially other allergens)- free.

Has she been seen by a paediatrician/paed gastro-enterologist?

Oh, and if you haven’t yet, invest in a wedge cushion for pram, cot, changing mat, etc. Avoid baby ever lying flat.

It's awful to see them in so much pain :(

After 6 months of torture the doctors prescribed Neocate (hypoallergenic) formula and she was a different baby within 24 hours and was able to come off the Omeprezole. Can you ask GP or hospital to try some or go dairy free if you BF?

We got prescribed neocate milk-free formula, along with ranitidine. It didn’t cure him but it made a difference.

Oh op I just read your post and brought back the memories from dd3.

We also did all of what your doing.

We did baby massage a lot at times when she was happy to try and make her relaxed as well as a wedge cushion in her basket and cot. She was upright pretty much up right all day at times.

We had specialist milk and her dose of ranitidine and gabiscon was checked every 4 weeks due to weight gain.

We also weaned early as suggested by our health visitor.

She's older now but is a really fussy eater with textures and flavour and we put it down to the milk and reflux.

It's a hard hard time op but it does get better and clear up. I know that's not helpful now

Is she breastfed? All of mine had this - I found out (after the first who I didn't realise until I weaned him, poor thing) that it was a food intolerance. I completely cut dairy out of my diet, plus a few other foods (soy, gluten etc) and it improved. Used a sling a lot, a prop up cushion. When I weaned I followed an extremely slow weaning programme and most of them couldn't tolerate dairy in large amounts until they were at school

Suffered through for 3 years. It was awful and I feel like I've blocked most of it from my mind. Getting the medication right was key for us. Domperidone and ranitidine with constant monitoring for dosage changes. Cot was raised and we also had a wedge pillow to further keep him at an angle.
For us it wasn't dairy, it was physical. They discovered this with a 24hr ph test and a camera down his throat. Poor kid ended up with oesophagitis and has had eating issues ever since

Forgot to add. Early weaning was a big mistake for us and made his problems worse

Dd1 really suffered and ended up with 2 hospital stays being tube fed as milk wouldn't stay down and her throat was so burnt. 16 years later and I still clearly remember the crying, never being able to put her down and the projectile vomiting.

Under medical advice she was weaned early and ate little and often, still does now or she gets heartburn and is sick.

Kept her upright for minimum of 20 minutes after each feed, wedge under mattress so she never lay flat and the baby sling was a godsend.

Totally against advice now but she was a tummy sleeper - as soon as she could roll over she went into that position and would sleep, it was the only way that was comfy for her so drs said leave her.

Yep as

Sorry posted way too soon!
Yep, as other have said, dairy free formula and ranetidine but it's still going on and he's in so much pain at 11 months. We are now under a dietician who is helping. I had to literally cry at the doctor for help before they would refer us to a dietician and even then the wait was 4 months long!
Hang in there. It's bloody tough and people who haven't been through it barely get it but it will get better eventually. I'm sorry you're going through this

Yeah ours was hospitalised for severe reflux, on ranitidine and then omeprazole which didn’t really help (omeprazole did improve it a bit). Weaning made the biggest difference- wean the baby on to solids ASAP- your baby is 4 months now which is the recommended weaning point in the US, Australia and Canada. It’s only the UK that still recommends 6 months.

That, and I drilled new holes in her cot post so she could be put down but be lying at an angle. Our GP said the closer to 45 degrees the better- I thought she’d just crumple when she fell asleep at that angle so I kept it to a more sedate 15 degrees, but yes, have them angled while lying down, and onto solids ASAP. Those were the two biggest factors for us. Continued with omeprazole until 6 months and then just didn’t need it anymore.

@xJune88 I was in the same boat as you when DD was tiny, and while she did have reflux, it turned out she also had CMPA (milk protein allergy). I was breastfeeding and eliminated dairy from my diet. She became a different baby after that. She is now 13 months and has thankfully grown out of it, but seeing her so unhappy was truly awful. I feel for you. Have you tried eliminating dairy? If she's FF, get her to the GP and mention CMPA. Don't let them fob you off.

Thankyou should of said shes formula fed were on aptamil 1. Consultant and doctors said changing milk wouldn't really help, I rang doctor again this morning and were finally been referred to a specialist but if the wait is long were going private. I'm extremely close to weaning here just to try something else. All her dosages are maxed out I literally live at the doctors begging for help I've also cried on them numerous times. Shes 16 weeks but not even had her 12 week vaccs yet she was so poorly with reflux they postponed them! God knows how I'm going to sit her still for them on wednesday. Just feel like I'm failing her :( 111 sent an ambulance as she couldn't breathe the hospital said the reflux was crushing her lungs. Fab. Its putting me off ever having another never thought reflux could ruin all of our lives! Which formulas are dairy free are they only available from the gp?? Thankyou all for advice but I've tried the majority x

Yes- both of mine, vomiting 20
Times a day, could only be held upright. They had cows milk protein allergy. Once they were on the right hypoallergenic milk they were much better. We had to fight the system though and ended up going private. If you are in the south I can recommend a great paediatric gastroenterologist allergist

Were in yorkshire. I try keep her upright 24/7 but when shes screaming nothing works and I mean nothing its horrendous. She just screams so much and ends up asleep because shes that exhausted. She also isn't sick anymore hasnt been for about 6 weeks which I think makes it worse because the acid just goes up and down and never makes it out.