Reflux - I need practical help badly!

[ThirtyLove]

Hullo all,
My 10wo DD2 has reflux and we are at our wits end. Every feed is a complete nightmare and it can take 2 hours to get a bottle in her by which time she has cried so much that she falls asleep. She gulps at the bottle like she's never been fed and gets lots of air in so I am constantly winding her, and all the back-arching and faffing about also causes wind. She will often vomit it all up again, either spontaneously or when we change her (she usually fills her nappy during a feed). We are barely sleeping.

I'm sure we could be doing more to help her but I don't know what.
Things we have done so far:
Propped up her Moses basket
Always change her propped up
Always change her before a feed but usually aphave to do it after
Highest dose of Ranitadine possible
Infant Gaviscon in some feeds (this helps but bungs her up)
We took her in to hospital on Sunday (she has open access to the paed ward due to many other problems she has and we desperately need her to gain weight so they told us to take her in). They altered some of the drugs she is on and prescribed us the Gaviscon

We use Tommee Tippee bottles but I've ordered some Dr Browns which should arrive this week.
She is on C&G now but has variously had Monogen, EBM, BM, SMA.
She weighs 3.5 kg.
I was breastfeeding her but had to give up as it was soul destroying and she was hardly getting anything (I had supply issues due to her being ill and off the breast for many weeks).

We could really use some practical help regarding what else we can try and how we can avoid being covered in vomit at 3am. Also her constant screaming during the night is waking our eldest girl up so if anyone has tips on ways of avoiding this I am all ears as that's very upsetting for her and she wakes up crying now which she never used to.

Many thanks in advance.

Could she have a cows milk allergy? Has she bee. Checked for tongue tie?

Both these caused DS's reflux & improved massively once we sort it. Otherwise, sound like you're doing all the right things. I would have to sit up for 30 mins after every feed before I could put him down when helped. In fact I tried not to lay him flat as much as possible.

What does of ranitidine? DS was on 1ml four times a day from 6 weeks, which helped.

Thanks all for your advice. Things have got worse if anything, and I feel absolutely soul destroyed :( She just cries all the time and then falls asleep. She is obviously hungry but it distresses her to eat. She's on 0.7ml of ranitidine 3x a day.

We've tried Dr Browns bottles but they make no difference. We've tried stirring the milk not shaking. I will buy aptamil next and then we will have tried every milk going! Don't think it's cows milk allergy as she was the same on ebm and Monogen. Yes she was checked for tongue tie.

She is generally very unsettled - probably hunger and exhaustion. I cannot enjoy her and I'm starting to think she must hate me. I would if I was her, I'm practically force feeding her.

I tried the tummy time thing and she just fell asleep.

Thanks again

Try asking to switch to losec, that sometimes has better results. You are doing everything right and I promise it won't last forever. There is a great Facebook group which offers lots of support and advice, search reflux support uk and it should come up.

Oh, it's a bastard isn't it? My sympathies.

Do you have a sling? DD was in one for about 18 hours a day at one stage. We also fed her upright - she was BF so maybe a bit easier than FF, but try it.

I also wedged a V cushion into her Moses basket - she was sleeping pretty much upright at one point but it made a difference. Sleeping in the bouncer on the most upright setting was also more successful.

Take heart - DD's reflux disappeared at 17 weeks.

Reflux is hell.

Practical things that helped us with DD:

A cleaner for 2 hours once a week.
Asking family & friends to drop in dinner.
A sling - used a Moby wrap & Kari-Me (needed 2 so I could wash one).
A sleeping wedge in the crib.
Co-sleeping.
Paediatrician allowed us 2 nights of Calpol every week - given every 4 hours for 12 hours - dose for weight not age.
One night a week DH & I got a night in the spare room drugged on Night Nurse - Fri for me & Sat for DH.
One night of a babysitter each week so DH & I could drive to a layby and sleep/cry/cuddle.
One night a month totally away from baby.
Motion helped DD sleep but I was tired to drive so I rode the bus in circular journeys - her in the pram & me with a pillow.
I had a fab HV who called or popped in every week so I could cry on her shoulder.
Pestered the GP for a paediatric referral - saw 6 different GPs in 8 days.
Joined littlerefluxers.co.uk for online advice.
On High Needs Baby Thread here on MN for support.
Sat in the car for 1 hour a day when DH came home from work with the radio on so I couldn't hear the screaming.
Walked the pram for hours as the screaming wasn't so loud outside.

I found having a refluxy baby very isolating. I came home from Mum & baby groups crying nearly every time as no other babies screamed like mine and the other Mums were always so shocked. I should've pursued a Home Start volunteer referral from my HV. I ended up with Post Natal Anxiety.

We got the meds sorted out by a paediatric consultant at 7 months. DD's symptoms were gone after 48 hours and she slept 12 hours plus 2x2hr naps. I still find it amazing she sleeps during the day now She did not nap longer than 10 minutes during the day between 8-25 weeks. We can always tell when she has gained weight as the symptoms recur.

I hope something here helps. Have you been offered omperazole or domperidome? (Sorry if spelling is wrong)

Have you seen a consultant paediatric gastroenterologist? If not, it's worth pushing for a referral. You really need expert advice.

I also wanted to say how hard it is & it can take you to the edge of your sanity. My DS had very severe reflux until age 3. I was very close to losing it at times.

What helped in the end was Omeprazole (adult dose). I found Domperidone useless. We also tried an antibiotic (which I've forgotten the name of) which didn't help. Thankfully things got better before we got to the Ondansetron stage.

My DD suffered with reflux too not too horrifically but all the same... Practical things that worked for me:
Kept her propped up whenever possible
Dr. Brown's bottles helped with the wind, and also going up to the second teat size helped because she wasn't sucking so hard and gulping air
Comfort milk was.a bloody lifesaver. It's sometimes labelled as "stay down" stuff but it did.just that for us
Lastly, I took her for cranial osteopathy and quite frankly it was like magic! I took her a windy, projectile vomiting banshee and came home with a slightly windy baby. I know it had varying degrees.of success for everyone, but it's got to be worth a go. Nothing to lose etc etc?

Will be back if I think of anything else, oh and feel free to pm me if you want to talk any more about cranial osteo

I second cranial osteopathy. It helped so much. Also, change of milk to Nutramigen. That helped the most, I could see the difference instantly. DS stopped crying and had cried constantly before so I could really tell the difference. And when I say constantly, I mean constantly. I was 3 dress sizes smaller then pre-pregnancy within 3 months after DS was born, I was a prisoner in my own home because I dreaded going out to any baby groups, any shops, or really anywhere. So I do feel your pain OP.
What I can say from experience is that it really DOES get better. I didn't believe it at the time but when their tummy muscles get stronger and then when you introduce solids, it really does get better. DS is now 7mo and I cannot believe we actually survived this.
I wish you all the best and hope that you find what works best for your baby soon.