Inconsolable crying due to reflux

[pipko]

I have a 10 week old daughter and to say she is hard work would be an understatement. Cut a very long story short, she would not latch to my breast so I had to switch to formula which I really didn't want to do but had no choice. From day one on formula she would scream after every feed. After MULTIPLE visits to doctors it was put down as extreme acid reflux, a suspected cmpa and colic. She was put on Neocate formula and Omeprazole. I also tried every over the counter and herbal approach for colic. Holding her upright after feeds.. etc etc.. 3 weeks later on the 13mg on Omeprazole daily and the Neocate there is no improvement! She literally scream cries for hours and hours on end. It's inconsolable crying, nothing soothes her, she even pushes away her bottle and dummy when she becomes so worked up. She also doesn't sleep which means I don sleep. I can tell she is exhausted because she keeps trying to fall asleep but wakes up screaming. She goes from 0-100 within seconds. It's so so hard to deal with I feel like I'm going off my head. There is no routine and everyday feels like Groundhog Day. We are pretty much housebound because leaving the house is a task and she can start crying anywhere which isn't pleasant in public. The doctors are useless to say the least so I'm trying to find other people / ways of help. People keep telling me it will pass but when?!? When your in the midst of it you really struggle to see a light at the end of the tunnel. She goes red, curls up in a ball or arches her back, shakes her head, pulls up her legs, moves her arms and roars and screams until she is purple!!!! My heart breaks for her and I am desperate for answers and to help give her some relief!! Has anyone that has had similar experiences found anything to help? Any remedies or even bits of advice you can give me?

It does pass I promise! For us it was at the four month mark when they could sit up a bit better. The only way the upright thing worked was if I held him having away from me - one hand under the bum, one holding his upper body up. I spent hours rocking in front if a mirror so I could see his face! Is there anyone who can give you a couple of hours rest so you can also and have a shower?

I've had two reflux babies, one of whom was later diagnosed with CMPA. It's awful, it really is. There is nothing you can do to ease their pain other than cuddles for reassurance.

You just gotta hang in there for a while longer. It took about 8 weeks for the dairy to leave my baby's system once we finally switched to an amino acid formula. Your baby is getting all the right treatment, it just needs time to work. I really feel for you, it's truly heartbreaking as there is nothing you can do to help. Keep offering the dummy as sucking can help keep the acid down. Accept any offers of help. Put baby in a sling or pushchair and go for a walk even if you don't feel like it, the motion can help settle them sometimes.

Tag team with your partner/husband whoever you trust to hand her off to and hopefully at someone else's house so you get to sleep. Have you anyone?

Reflux is truly shit because they are in pain but it does take time for medicines/formula to work. Ds2 slept upright on me during the day for over a year, I wore a sling to do the preschool nursery run every day. I sat in a pitch black room just holding him upright no rocking, no patting, just shushing (now you get your phone to play white noise) and waited for him to drift off. Obviously I could only do that if Ds1 was at preschool or Dh was home.

Awful but you have to accept that this is how it will be for a bit. However, we were referred to a paediatrician when the meds the GP was willing to prescribe didn't work so we felt we were seeing a specialist. You have the added cmpa aspect. I bet you feel cheated, this isn't how it is meant to be is it? Ds1 had reflux but it was mild compared to poor Ds2. He is now a strapping 15 year old but I still remember how stressful it was.

This is by no means an easy option, but would you consider relactating and then either exclusively pumping or getting her latch sorted with the help of an IBCLC and tongue tie practitioner? Hard but can be done. Just thinking that if you did that and went dairy and soy free yourself that might help matters.

Also I know you said you've tried everything over the counter, but does that include Colic Calm? It is lesser known but bloody brilliant in my experience with a reflux baby.

Sending you lots of positive thoughts. Hang in there!

I am so sorry. There aren't always remedies or answers... it can just be that sometimes babies just do this and then grow out of it...
I agree with what @Timeforsinging81 says, it is always good to get out especially if baby is in a sling. I tried to leave the house every day, even if we only went to the postbox. Also don't forget if it really really gets too much, you can put her safely in her cot and walk away for a little bit to pull yourself together. I am not advocating leaving her to cry all night, but just give yourself space for 5 mins if you feel like you are losing the plot.

Also have you considered cosleeping following the Safe Sleep Seven? It can bring a lot of comfort and relief to reflux babies and if done following the guidelines is likely safer than you trying to function on no sleep.

Bless you, our oldest was like that and it's AWFUL.
Your baby will get a little older and it will get better and they won't remember one second of this. So harrowing for you tho.
We found a goats milk formula was a game changer. Costs more, can't remember what it's called now but they sell it in waitrose, and probs on amazon. Worth a go?

It's tough.

Dd had silent reflux and a milk allergy and it was just horrific. We had ranitidine, omeprazole, prescription milk. It took 48 hours to see a difference in her, less screaming, smiling, etc but it took a good 6/7 weeks for the dairy to come out her system.

We were advised to wean at 16 weeks due to the silent reflux. It helped a bit but what helped the most was making the foot side of the next to me cot 2 levels lower than the top end.

A sling was a godsend.

Op I absolutely feel your pain. My dd was exactly like this and I felt exactly like you. I did still take her out places as I had to for my own sanity, but I have so many memories of walking round the shops etc with a screaming baby and everyone staring. I took her to a huge shopping centre at about 8 weeks and carried her round the entire place all day as she screamed non stop, my arms were dead and i felt emotionally dead by the end. She never slept, she didn't self sooth or settle. She was in short, a nightmare. We tried all sorts, different milk, medicines etc, nothing helped much. I'm afraid time was the great healer in the end, and even though I know only to well in the midst of this you can't see a light, there is one and it will be here before you know it, things probably got better around 5/6 months. DD is 15 and now it's just a distant, yet vivid memory.

squee123 Relactating and exclusively pumping?! Life with a reflux CMPA baby is hard enough without adding the huge strain of pumping every few hours, including through the night. It's just not doable, especially when you cannot put the baby down without them screaming. Plus the added pressure of a restricted diet for the mum. Madness to suggest such an idea when the OP clearly needs to do whatever she can to maximise her rest time and look after herself.

Safe co-sleeping is a good idea though

For colic I used the tommee Tippee advanced anti colic bottles, read the reviews was abit sceptical but I kid you not within a few bottles my son drank all his bottle no whinging, burped really well and I've just used them ever since, they're fab!

@Notashandyta

Bless you, our oldest was like that and it's AWFUL. Your baby will get a little older and it will get better and they won't remember one second of this. So harrowing for you tho. We found a goats milk formula was a game changer. Costs more, can't remember what it's called now but they sell it in waitrose, and probs on amazon. Worth a go?

I have already had her on Nannycare goats milk & Kendamil goats milk, I'd be scared to switch back just incase it made matters worse

@Timeforsinging81 I acknowledged it is a tough option, and I appreciate not an option for everyone. But I wanted the OP to know it was an option in case she didn't as I had no idea it was an option until a friend did it in a similar situation.

Yes it was bloody difficult, but she felt that ultimately it was easier than trying to feed formula to a CMPA baby with a soy allergy.

She wouldn't necessarily be exclusively pumping long term if the latch could be sorted with proper support.

Of course there's zero shame in saying that's a complete no go, but I think it's important people are aware of all the options so they can make an informed decision.

I’m in the same boat it’s awful. It’s so stressful even going on a walk and the screaming breaks your heart. I haven’t tried yet but I was told to try use a baby carrier so she is upright to help with the reflux and to accommodate me moving in comfort too!!!

Not to dismiss the possibility of reflux /milk allergy but have you properly checked for tongue tie? NHS are useless for this, and default to blaming it on a milk allergy. As such, you'll probably have to go private if you do go down that route.
My DS was hospitalised at 7 weeks after he went blue due to choking/severe reflux, and they gave him a prescription for nutramigen, which (because its thinner than proper formula) he simply threw up even more. It turned out that he (now 11 months) had a 75% tongue tie and magically all the reflux went away 90 minutes after it was snipped. He never had a milk allergy, and reflux was due to him taking in about the same amount of air as milk because he couldn't get a good seal. When we went for follow up appointment, I got a shame faced hospital consultant apologise to me for it!
Just one to maybe look into.
Been where you are. Drove for hours in the car because car seat was upright and he could get air bubbles out. Properly exhausting. You have my sympathy. Good luck

I went through this with my dc2. There is more meds you can try - ranitidine, omeprazole and domperidome can all be taken together- so dont be afraid to go back. We were under a paediatrician at the hospital for a few years and she was brilliant. Defo wean early and have baby as upright as possible. Prop the cot too.

We had to wean with no dairy, wheat, soya or eggs to start with.
I now have a happy 12 year old who still wakes early and thanks to the reflux can burp the alphabet.
It’s really tough so take all the help you can.

[quote squee123]@Timeforsinging81 I acknowledged it is a tough option, and I appreciate not an option for everyone. But I wanted the OP to know it was an option in case she didn't as I had no idea it was an option until a friend did it in a similar situation.

Yes it was bloody difficult, but she felt that ultimately it was easier than trying to feed formula to a CMPA baby with a soy allergy.

She wouldn't necessarily be exclusively pumping long term if the latch could be sorted with proper support.

Of course there's zero shame in saying that's a complete no go, but I think it's important people are aware of all the options so they can make an informed decision.[/quote]
Neocate has no soy. My baby is CMPA and reflux. We had to combi feed for 15 weeks until he began refusing the bottle. I would not wish what I went through to fix his latch after a TT (cut at 8 weeks) and subsequent bad feeding habits, and milk supply, on anyone. It was hell on earth and I already had a 60% supply. I love BF, I'm training as a peer supporter, but that experience is not advice I'd offer to a mother on the brink.

OP, it gets better. Are you thickening with Carobel? Neocate is very thin. It makes the reflux worse. Are you on liquid suspension omeprazole? I found the tablets didn't work well as we couldn't syringe in the lumps. Make sure babe is on the highest dosage for weight. There's an avid battle with omeprazole bit once it passes life is beautiful.

acid but
One handed typing!

Have you thought of visiting a cranial osteopath? (one who has done further training in treating babies of course).

I went to see one myself and she worked wonders, and my colleague also used one for her very distressed and inconsolable baby, and it worked wonders for her too.

Just a suggestion.

I was very sceptical at first but desperation led me to try it and it was the best thing I ever did.