silent reflux... help!

[aldeburgh]

Dd2 has been diagnosed with silent reflux at 5 weeks although has exhibited pretty much since home from hospital.
Cannot be laid down (even with Moses raised on books) even in the deepest sleep she wakes within minutes so we have been doing shifts holding her at night so we both get some sleep.
She has not gained weight well and has dropped centiles so advised to give a bottle an evening so i could sleep and hopefully help my supply (which is in doubt) and that was working well for a week and a half.
Dr prescribed ranitidine and we started that Saturday but she has been even more unsettled since taking it. I called gp but our fab one is away.... Got told to bring her in just to make sure we are not overlooking an infection... Gp i saw started to question the reflux diagnosis despite me trying to say i wasn't there for that reason just wanted to check ok to carry on with ranitidine and that she was ok. Gp said she was always sceptical of reflex diagnoses and suspected dd was hungry and that since i said i was not liking breastfeeding (i am exhausted and questioning my supply and stressed by my baby being so unwell i am hardly likely to feel warm about it) she said to stop bf and give formula.
I asked about special formula (regular gp had suggested that would be next avenue of investigation for cmpi) and she looked blank and said "i didn't even know you could get special formula" "!!!!!!!! Needless to say i left not knowing which way is up.
Is my baby hungry and can that manifest reflux symptoms???!
Could just one regular cows milk formula a day build up and cause her to be so so unsettled?
Is the ranitidine likely to upset her even hours after last dose? Am conscious that the worsening reflux could have happened anyway and its just the medicine hasn't kicked in yet?!?!
How quickly would dd settle if we switched her nightly bottle to hydrolysed formula? I have not had dairy for 3 weeks....
Help.

Do not be fobbed off by GPs who just haven't got a clue! Reflux exists..your baby is not exhibiting all these symptoms from hunger I'm sure. We were fobbed off countless times with DS but as a mother you know when something is wrong!! This was later proved when a barium swallow discovered he had a hiatus hernia and ph study confirmed the acid reflux.
Push for a referal to a gastro paed this is the only way to get any real help, and if things get worse just go straight to the hospital and this will fast track you to see someone and get the correct meds.. If ranitidine isn't working, which it didn't for us then you probably need to try something stronger maybe omeprazole. We also used the special milk for over a year but to be honest I don't think it made a blind bit of difference, my DS also struggled to gain weight just because he would hardly drink any amount due to all the pain. I would really try and hold off giving the formula in case it aggravates things even more, I didn't breast feed but with all his problems in hindsight i wish I had as that has to be easier on their little tums.
Have you tried infant gaviscon? You can buy the sachets over the counter, it can make them a bit constipated but it does help a little.
X

Can we buy enfamil ourselves to try?

Thanks ladies for the advice. Dd seems to be struggling with wind/tummy pains and looks (and smells) desperate for a poo. Isn't feeding great which tends to happen hen she is bunged up. She doesn't poo daily which i don't think helps her reflux at all.

Dd feeds for ages and even after that shoves her fist in her mouth... Gags and stinks of acid burps... Can't be laid down... has bouts of hiccups several times a day... Sneezes about 20 x a day... Coughs lots... Passes wind that makes dh wind smell like roses!!! Sounds like a grunty pig when she breathes sometimes... Tongue out all the time and saliva bubbles alot... Possets watery stuff with little milk curds... And so on.

Didn't think they were classic hunger signs hence taking her to Dr in the first place. Frustrating how they can be so hit and miss these health care professionals!

I've had two children with reflux though dd is still b young so we are still working out what is best for her.

What we have found with ranitidine is that it stops the distress from
Pain but not stops the actual food coming up.

It was all they would give us with DS but with dd we has that and peptac. The peptac seems to be helping stop the food come back up a bit.
Not completely but improves things.

We still have to hold her upright but beforehand she was still struggling even when held upright.

Perhaps a combination of medicines would help you more?

There is also infant gaviscon but it stopped dd pooping. Peptac does to a lesser degree but because of how it's helped we are currently trialling a lower dose today. Am currently praying for a poop filled nappy as it's overdue.

Anyway just to say really hold in there. We have always been referred to a reflux clinic, if you have trouble accessing a good GP this light be worth exploring.

My experience is that getting reflux treated takes trial, error and persistence.

Ive not read the other posts so forgive meif ive repeated them.

My ds is 2 years and 8 months and still has reflux.

Things to try

• omperzole. Ranitidine made ds worse
• stay down milk. You can buy it from boots
• baby sling during the day keep baby upright to minimise acid reflux.
• ask for referral to gastrics at local children's hosp as gps dont have the knowledge to treat reflux correctly.

My baby was first diagnosed at 2 months of age even though he suffered a lot earlier. His reflux was the whole projectile vomiting lots of times a day. He lost lots of weight and was surviving on 2 oz of milk a day. He was18months old when he was finally taken seriously and we traveled 2 hours to see a gastric who finally did something. Ds was that bad he was classed failure to thrive. He didny double birth weight until he was over 18months old. He had a tube put into his stomach to feed him as he had food aversion due to the pain and we increased all meds to make sure his insides arent damaged due to excess acid. A year on after his tube and hes the happiest little boy you would ever see who still refluxs but its now silent reflux and has had to learn to live with the pain.

X

The gaviscon is a milk thickner to make it harder for the milk to come up. It does cause constipation. The stay down milk does a similar thing.
X

Yeah peptac works like gaviscon. I think the issue is that it thickens their poop too.

Just hoping for poo from dd now as we started her back on lower dose peptac last night and no poo this morning.

Reflux sucks. You're not alone op

Deffo go back to see your fab GP. It could well be a diary allergy, and yes, one bottle of formula is going to affect a baby with CMPI. The stand-in GP sonds a bit meh, although I think he or she is right to investigate other causes that might present as unsettledness and reflux.

You say your baby hasn't put on weight steadily and has been dropping centiles. Can you say what the pattern's been like - e.g, what did she start on and where is she now, how long did it take her to regain her birthweight, etc.

Have you seen anyone who really knows about breastfeeding to check for milk transfer issues, like poor latch, or tongue tie? If not, I think it would be very useful to do so. Whoever told you that resting is going to sort out your potential milk supply issues is not very knowledgeable about breastfeeding :( Replacing feeds with formula will likely reduce your supply.

I think it's true to say that what looks like reflux (especially of the silent variety) could be caused by hunger, but, it could also be caused by any number of other things....

What symptoms of reflux does your baby have? Is it just the lying down thing, or are there other things too?

If you wanted to try a hydrolysed milk, then you can buy them OTC in boots although they are usually on special order and are £££££. Staydown and anti-reflux milks are not hydrolysed milk products - they still have intact milk proteins in them. Hydrolysates include aptamil pepti, nutramigen. Then there are the elemental milks with no milk protein in them - like neocate and nutramigen AA.

re the ranitidine, I wouldn't think it would take too long to kick in, although if there's damage to the oesophagus it can take a while to heal. I think this'd be unlikely in such a young baby though. It can speed up digestive transit if I remember rightly - perhaps your baby's not happy with that sensation?

Ps what is peptac? Is it adult gaviscon??

Sorry, I see you listed the symptoms she has .

DS had awful acid breath and most of the other symptoms you describe: he was a lot better on both Lansoprazole (like omeprazole) and on a hydrolysate formula (we stopped BF for reasons connected with my health). He also had tongue tie...

narmada when did your ds grow out if it?

Dh bought aptamil pepti on lunch break so we can try that.

Hv came today and said feeding well.... Tongue tie unlikely as she sticks her tongue out all the time apparently

Weighed today 9lb2 just below 9th cebtile and down from 25th (will be 8 weeks Sunday) at birth ... She lost 9% of birth weight 7lb6....wasn't back over that for 4 weeks i think.... Can't be sure as Her red book is with hv who has just been and wanted to take it back to talk to her boss and is coming back later.... So now we don't just have sr to worry about but now i am starving my baby :( gutted

I think both hv and gp could see how exhausted i am and decided i needed some sleep.

isitme :( poor ds and poor you. Pleased to hear he is happy though. Do you get any sleep now?

doodle did the poo come that you have been hoping for?? Fingers x-ed... We haven't had one for 2 days here. :(

It was under control from about 6 months in DS's case but it would probably have been sooner than that - his care was derailed as some slightly nutso paedeatrician decided he likely had something more serious going on with his muscle tone (he didn't....thankfully) and we spent months investigating that while his reflux/ milk allergy was basically ignored :(

Once the milk and meds were adjusted correctly, at about 6 months, he was fine. He grew out of the milk allergy by around 2 years of age and was off the PPI drugs at around 12 months of age IIRC.

Tongue tie cannot be ruled out on the basis of being able to stick tongue out clear of gumline - it is about how the tongue works in the mouth, whether it can adequately move to compress the areola. IIRC the only way to diagnose TT correctly is by putting finger in mouth and actually feeling how the tongue moves - that's what our lactation consultant did. Check out the milk matters website, it has good info on TT.

No poo for days and days and days can be normal in BF babies when they get past the first 6 weeks or so. Be prepared for a poonami when it does arrive!As long as her nappies are wet, then that's a good indication.

Re weight, losing 8% of birthweight is not that worrying, is within the range of normal. I also don't think a drop of basically one centile is reason for your HV to panic if your baby's otherwise developmentally normal. I just looked at the growth charts and from what you've said it looks like at 4 weeks of age she was on the 9th centile, and now at nearly 8 weeks of age..... is just below the 9th centile. That means that she's been gaining appropriately in the last 4 weeks doesn't it??? It doesn't sound to me like you are 'starving her' at all.

Re sleeping, have you tried...... (you will hear that a lot from well meaning people) co-sleeping? many many little babies don't like to be apart from their mums and sleep so much better in bed with you. Probably teaching grandmother to suck eggs, but thought it was worth a mention.

Crikey .... Muscle tone investigations must have been scary. Eek.
Ah that makes sense about tt... Will check out website. I am utterly wiped out so i really do think my supply will be suffering. And i am concerned about her not going back to 25 centile... Dd1 was 9lb3 at birth and was a chunk so it was strange enough having a 7lb6 baby let alone when she dropped below 7lb she is a dot.

She has never pooed every day even from birth... I kept pressing every hcp about it as dd1 pooed all the time and it felt wrong but kept being told it was ok... Til i saw gp who was/is concerned and hv today is concerned. And yes... When she goes... She does it in style ;)

Co sleeping... Would do anything that would work but she won't lay on her back anywhere... But she is sleeping on my chest while i am propped in bed (feels safer than sofa) and i have nodded off a few times and i feel awful but can't help it. I have tried to make it as safe as poss by strapping her to me with her blanket but i still feel terrified.

not all babies stay on birth centile- it's called catch-down growth IIRC.

Not much poo in early days plus slowish to regain birth weight to me suggests poss milk transfer issues, or supply issues...... gah, hope you get some good feeding support soon . Have you called NCT bf counsellor or anything?

Ultimately if you feel something's not quite right the pursue it, if you have the energy. Try the pepti, see what happens.

I would deffo investigate the TT. Specislly if she clicks when feeding or anything like that. xxx

That's what i thought about not pooing. Not normal at all. But they kept telling me not to worry... Now they are concerned.
I am low on energy but want to carry on with at least some breast feeds longer term if i can... Will look into tongue tie. She snuffles when she feeds... I thought it was clicking but it only happens on a swallow usually and hv listened and didn't think it was clicking. Would it be obvious?

Thank you

In my experience the clicking is really audible, sounds like a mini slap.

You must be knackered, people don't really appreciate what its like to have a very unsettled, refluxy baby unless they've had one. It can reduce you to a shadow of yr former self.

My DS had silent reflux but we didn't realise so no medication for him! We thought it was colic. Sometimes when he felt bad, the only way I could put him down was in a swing (we had a take long swing and took it everywhere,) this was a bit more upright than a bouncy chair so he was more comfortable. There were a few nights when he slept in the swing because I simply couldn't do any more.

You need this book and the Little Refluxers website which between them saved my sanity with DS2, who had silent reflux and underlying MSPI (milk and soya protein intolerance)
Yes absolutely one bottle a day of a dairy based formula could be making things much worse.
Poor weight gain despite decent intake is one of the signs of milk protein intolerance, along with a range of GI signs like reflux, constipation, diarrhoea, mucus or blood in poo, abdominal pain and wind, skin rashes especially a red ring around the anus, respiratory signs like wheeze, snuffles, cough and behavioural signs like being unsettled.
The tongue tie is worth pursuing, lots of info on this here and here
Try to see an IBLC qualified breastfeeding counsellor to get to the bottom of whether you have any supply or latch issues. People are very quick to blame the breastfeeding if a baby doesn't gain weight and it's not always the cause.
Be brave and keep pursuing this. You will be written off by a lot of people as a neurotic mum, but you know if there is something wrong. A lot of GPs are not well informed about this so you have to do your own research and wear a path in their carpet until they pay attention.
Same happened to me when DS was 4m old, he fell off the centile charts completely and suddenly they were worried when I'd been there for months telling them he was poorly.
Omeprazole and a dairy and soya free diet for me largely sorted him out and he was off meds at 16m, on dairy at 2 and episodes are very rare now he is nearly 3. I hope that is not too depressing, there is light at the end of the tunnel but it can be a way off, so you need to pursue a treatment plan that makes life bearable in the short-medium term.

Thanks so much for all the advice and links.... I looked at milk matters and broke down in tears.... I think it is very possible she has a posterior tt and i feel so gutted i didn't realise. I just assumed my nipples were sore because of the amount of time she spent feeding. It is not excruciating and i have hardly had to use my massive lansinoh supply so assumed all was well.
There is a definite sound when she feeds... I had asked hv if it were a click but it doesn't happen all through the feed.
I have found a local ish lactation consultant and shall be phoning for a consultation as soon as she starts at 10am.

*was a click.

LC booked for Monday afternoon.

Oo yes little refluxers website was brill. Tell jenny that mannis mummy sent you ( along sidr the first poster who mentioned it)

Ds is 2 and 8 months and I have just in the past 3 days had 3 full nights of him not getting up due to pain! However haven't been able to sleep properly as im 30 weeks pg lol.
How is the lo now? X