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To ask for help - reflux baby. I’m desperate

(43 Posts)
lillianhom Mon 06-Nov-17 11:21:23

Hi, I know this isn’t the best place to post but there is more traffic here and I’m wondering if anyone has any advice.

My 8 week old baby seems to suffer from silent reflux and sometimes the odd posseting. She also seems to get quite chesty after a feed (could this be dysphagia??).

She arches her back after a couple of sucks from her bottle and screams and cries. Every bottle is a fight. She coughs and gags her way through it over an hour plus. She will only take .5-1oz at a time and very slowly. She stops breathing whilst feeding sometimes.

I took her to the GP who prescribed infant gaviscon but this did nothing except make her constipated.

She has not had any common symptoms of cmpa however the GP referred her to the paediatric dietician who has now put her on nutramigen puramino and carobel. I express breast milk (she never latched) and substitute the rest with formula. I am also no longer eating any dairy.

Since going on this new formula she is no longer interested in eating. She only had 15oz yesterday when before (at around 4 weeks) she was eating around 30oz (this would be around 30 separate feeds a day). She has never taken a big feed in one sitting (more than 2oz). She does not sleep in the day. She has been awake for 16 hours straight on several occasions yet the GP doesn’t seem concerned.

Her weight gain is fine so far.

I am at my wits end! Has anyone experienced anything like this??

ittakes2 Mon 06-Nov-17 11:51:09

My son had digestive issues. I met mum at the doctors whose son had this also and couldn't tolerate her breast milk despite her being dairy-free. She suggested nutramigen which helped and my son stayed on this until he was 6! BUT his problem wasn't solved by nutramigen and gaviscon alone - best thing I did was go to cranial Oesto who specialised in babies. Babies necks can become tight in womb and/or during birthing process putting pressure on nerves in their neck responsible for digestion. It's medically recognised and insurers like BUPA do cover it because of this. I've had so many friends whose irritable babies with feeding issues have found instant relief for their babies after cranial - but pl go to someone who has trained in this area. I'm not sure if a cranial sacral practioner has the same level of training as a cranial Oesto but googling this will tell you. Good luck!

ittakes2 Mon 06-Nov-17 11:53:21

Also, sorry forgot to ask if she has been checked to make sure she doesn't have tongue tie (ie the piece of flesh under her tongue is not restricting her movement).

LittleCandle Mon 06-Nov-17 11:56:58

My cousin's son had dreadful reflux and the thing that helped them was a tummy tub. It brought lasting relief.

Smallpotatolove Mon 06-Nov-17 12:01:22

Have you been given reflux medication as well as the formula? Did you do a straight switch to the new formula? You can mix it in gradually over a week or so with either breast milk or her old formula, she is more likely to drink it this way although it obviously takes longer to get her settled on to the new formula.

TheCygnet Mon 06-Nov-17 12:03:22

Puramino and other amino acid formulas taste disgusting - have you tried flavouring it with vanilla or Nesquick powder to try and get her to take more? This is quite common with AAF and you gradually wean them off the flavouring once you've got them drinking properly.

Also, ask for a paeds referral if you haven't already got one. They can give you better reflux meds than a GP (who can only give gaviscon and ranitidine). You don't mention ranitidine so it might be worth a try. If that doesn't work talk to the paeds consultant about omeprazole or lansoprazole. Also ask about whether she could have delayed gastric emptying. My DS has CMPA, GORD and DGE so we have tried a lot of things wink

TittyGolightly Mon 06-Nov-17 12:05:22

Cranial osteopathy is not medically recognised, at all. From the Bupa website, ittakes2:

Yes, osteopaths do offer treatment to children. They are trained to treat children during their degree and some osteopaths choose to focus on and forge their career specifically in paediatric osteopathy. But again, how well it works is uncertain. For some conditions such as excessive crying in babies (colic), there isn’t enough evidence to show that it works. If your child does have osteopathy, the techniques used will be very gentle. Older children and teenagers can have osteopathy too.

TittyGolightly Mon 06-Nov-17 12:07:02

Babies necks can become tight in womb and/or during birthing process putting pressure on nerves in their neck responsible for digestion.

Digestion doesn’t take place anywhere near the neck.

If you’re going to give this sort of advice, might be worth checking you understand basic biology first.

Changerofname987654321 Mon 06-Nov-17 12:07:41

Did the gaviscon help the problem at all even if it caused constipation?

Rantitadine is an alternative to gaviscon.

lillianhom Mon 06-Nov-17 12:09:41

She did have tongue tie but this was snipped at 5 days old. She was a c section birth do you think she will benefit from cranial osteopathy? I’ll give the tummy tub a go.

I’m mixing half breast milk half nutramigen with the carobel. They’ve not offered any reflux medication they wanted to see if it is cmpa before doing anything else I think. It’s such a nightmare. I feel so sorry for my daughter.

I’ll keep asking and hopefully more will be done. Thank you guys flowers

OhOurBilly Mon 06-Nov-17 12:14:22

I was going to say have her checked for tongue tie (by an infant feeding specialist/lactation consultant.) My ds started off well but from about seven/eight weeks was struggling to feed, gagging/choking etc. Does she "click" when she feeds? DS had a posterior tongue tie, once it was divided and he could feed properly, it was like having a different baby.

(Gp thought it was silent reflux, HV said I didn't have enough milk. It took me till he was 18 weeks and absolute at the end of my tether before i was referred to the feeding specialist. Your local breastfeeding support group will usual have details on how to get in touch with them).

OhOurBilly Mon 06-Nov-17 12:15:32

Aah cross post, hope you manage to get kt sorted op flowers

BzyB Mon 06-Nov-17 12:16:42

Mine benefitted from it but was an unstable lie - either breech or sideways right up til 39w ( when I had a cs)
She also had torticollis not picked up by anyone previously and I was dismissed when I mentioned it. CO had her turning her head in literally 30 seconds ( though took a few treatments for long lasting improvements)

Spuddington Mon 06-Nov-17 12:16:58

Gaviscon is useless for actual reflux.

We ended up with Neocate and carobel - slightly more palatable than nutramigen and you can pop some vanilla in if necessary.

DD was also on omeprazole dispersible tablets. It changed our lives! Weaned off by 9 months and now on milk ladder.

Go to your GP and make a fuss. It can be managed.

Spuddington Mon 06-Nov-17 12:17:54

(Reflux and cmpa go hand in hand, not worth trying elemental formula if the reflux is still there)

Oly5 Mon 06-Nov-17 12:20:19

Cranial osteopathy did nothing for my reflux baby.. and neither did ranitidine, gaviacon or special milks. By 6 months it had all gone and he was a happy baby. But those six months were hell. Definitely keep going back to the pass but I’d follow their advice to be honest. If her weight gain is good, they will be less worried.
Hang in there

HappyLandFan Mon 06-Nov-17 12:20:19

Gaviscon is on is evil and only constipates babies.
Ranitidine worked, but was hard to get the Gp to prescribe,
They will fob you off no end, sadly you need to fight.

Oly5 Mon 06-Nov-17 12:20:40

Paed not pass!

Ixiepixie Mon 06-Nov-17 12:24:23

My baby has reflux and is on ranitidine now. The gaviscon was a nightmare to administer and didn't help anyway.
Is your baby gaining weight? If she is gaining weight and is sticking to her centile, then that indicates that she is getting enough nutrition, even if it doesn't seem like it. However, if she is not putting on weight or has dropped a centile, insist on being referred to a paediatrician.

I really feel for is so awful when they're in pain 💐

Stroller15 Mon 06-Nov-17 12:25:27

You must be at your wits end having to do up to 30 feeds in a day with no nap/rest time! Please keep going back to your GP and keep asking for help - don't even think about what they'll think. Like the ladies above said, it can be managed.

My son had a severe tongue tie (which was snipped at 9weeks) and silent reflux. He was on gaviscon and ranitidine which worked together and was on it till about 8 months old when it slowly went away after going on solids. I used to get my dh to wrap and carry him every night from 5pm to 1am just for all of us to get some rest. The worst bit was seeing my baby in so much discomfort.

Good luck!!

RidiculousDiversion Mon 06-Nov-17 12:27:00

Keeping her upright will help - my reflux baby basically lived in sling (upright, tummy against mine) and walking with her in the sling (a wrap style one) was the best way to calm her (though it didn't always work). Having cot / pram / changing mat propped up at the head so she was never flat also helped. Minimising the use of the car seat (she screamed and screamed in it) was a good thing, I think it scrunched her up too much.

Also, tongue ties can re-attach, have you had her checked since it was done?

thismeansnothing Mon 06-Nov-17 12:28:12

Dd had horrendous reflux. Went through the tick box exercise the GP out us through of infacol, colief and infant gaviscon. And only got a paed referral at her 6 week check cos she stopped gaining weight. I eliminated dairy asi was bf and we were prescribed Ranitidene and Domperidone. It didn't fix it but it helped a lot. (When I stopped bf we had sma soy formula) She still had symptoms and was quite acid pukey until about 18 months. Then she suddenly appeared to have grown out of it.

divadee Mon 06-Nov-17 12:28:44

I know exactly what you are going through and it was hell on earth for us. We tried the gaviscon, nutrimegan, and it wasn't until we pushed and pushed at the gp that they prescribed ranitidine and it gave us a new baby. We joke that she was born 7 weeks later as that's when she became a normal, happy content baby.

Please push for some stronger medication. Or ask for a referral as a paediatrician will prescribe it for you.

Also a close caboo helped our sanity. Keep baby upright as long as possible.

The nights felt like forever when she would scream for 8 hours straight.

It will end. It will pass I promise you. Just push and push for some stronger medication.

HeyMicky Mon 06-Nov-17 12:31:47

Oh OP, I feel for you. DD1 had silent reflux and it's such a bastard.

HeyMicky Mon 06-Nov-17 12:35:29

Sorry, posted too soon...

Here's what worked for us:

- See your GP as soon as you can. And keep going back. Not all GPs are familiar with reflux, and certainly not silent reflux. It will be harder to get a diagnosis when they’re not a puker. Persist until you get help. Then keep going back to get your meds adjusted as baby grows.
- Keep a diary. Then you can show the doctor how often you’re feeding, how much (if you’re bottle feeding) and how long they hollered for after a feed.
- Film your baby. I took videos of DD’s bawling mouth and you can actually see the milk rise to the back of her throat and then drain away again. I showed this to the GP when they were umming and aahing about what it was.
- Drugs! You’ll probably initially be prescribed Gaviscon, which neutralises the stomach acid and forms a little blanket on to of the feed to help keep it down. You may then move on to ranitidine, which reduces the amount of stomach acid being produced. Beyond this, your GP can prescribe something like omeprazole, a proton pump inhibitor, which again inhibits the production of stomach acid. Make sure you give meds regularly – don’t just stop when you start to see an improvement.
- Propping baby up to sleep. You can put books under one end of the cot or a wedge pillow under the mattress to elevate baby’s head. At one point DD was sleeping almost upright – we made a nest in the moses basket out of a wedge cushion and a V cushion and dropped her down the hole.
- Get a sling. You will die without one. Baby is upright but can sleep on your chest. Parents have their hands free to do stuff. Plus, lovely snuggly baby time and they’re not screaming. Seriously, get a sling
- A dummy. This will create extra saliva to help sooth any burning in their throat
- Sleep in shifts. I used to go to bed at 7.30pm, just after supper. DH would hold DD and watch Breaking Bad, give a bottle of expressed milk at the late feed then go to bed at midnight. Then I’d be on duty for the rest of the night. That way I’d get at least five hours unbroken sleep, and DH would get six or seven (depending how late he slept). We barely saw each other in the week for a few months but I kept my sanity.
- Ignore routines. If your baby has silent reflux, there’s no “putting them down sleepy after a feed” – they’ll scream the place down. Accept that you’ll be holding them in the dark for hours, charge up your kindle and phone, and settle in. You can still keep a bedtime routine of bath, feed, lullaby etc – DD actually went to bed brilliantly after she grew out of the reflux.
- Get the hell out of the house. Baby will still cry after a feed but at least there are other people about. It’s miserable on your own. We went to at least one activity or group, sometimes two, every weekday.

Here’s what won’t help:

- Co-sleeping, in and of itself. Baby will still be lying flat. If you want to co-sleep, all power to you, but just bringing baby into bed with you will not make it any better for you or them.
- Colief or Infacol. This isn’t gas. Or colic. You need something to thicken the stomach contents and something to reduce the acid levels.
- Switching to formula. Again, go for it if it works better for you. It will be easier to share the load with your partner. And formula is slightly thicker than breast milk. But it’s still going to come back up. Keep breastfeeding if you want to – it’s not your milk, it’s their digestive tract. Maybe ask for some help with latch?
- Eliminating dairy. Reflux is not CMPI; there is no evidence to suggest they’re linked. Baby will have issues with feeds whether or not you’re drinking soy or almond milk, and you’ll be sad without cheese. (Babies with CMPI might well be pukers, but it won’t be silent reflux.)
- Cranial osteopathy. Reflux occurs because the muscular valve at the end of baby’s esophagus, which acts to keep food in the stomach, hasn’t developed properly yet. No amount of pissing about with their skull will make that develop faster. That’s like suggesting cracking your knuckles will fix your pelvic floor.

Hang in there - DD's got infinitely better at about 12 weeks

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