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Sat here in tears - Silent Reflux - Does it ever get better?

(71 Posts)
OpheliasWeepingWillow Thu 22-Nov-12 12:01:05

My dd had 4 vaccines last Thursday and another today plus 2 top teeth are coming through. Her reflux seemed to be getting much better and she took all her bottles today but at the SIGHT of the last bottle she actually gagged so much that she vomited all over herself and me.

She's bit hot so gave her Calpol and tried to give her some dinner (refused) so just a sip or two of water and then bed.

She's TINY and on great meds but some things like teething, colds or jabs just seem to throw her for six.

It's SO horrible to see and she's supposed to have outgrown it by now.

The worst thing is that there is just no manual - I have no idea if I'm ever doing the right thing and I feel like I am failing her horribly sad

Attempts to wean her off the dreaded bottle have failed and she needs the milk for calories but every feed is a nerve-wracking will she / won't she take it problem.

Not sure what I'm writing for - I just want to know that one day the end will be in sight? We have a great consultant and a feeding therapist but I have PND that is actually OK when she is drinking OK. It's really getting me down.

I've read My Child Won't Eat but unhelpfully he does not really address physical / medical problems which result in failure to thrive.

purplerainbow Thu 22-Nov-12 12:02:41

How old is your dd?

purplerainbow Thu 22-Nov-12 12:04:17

I have ds1 whos 6.6, ds2 who is 4. ds1 had reflux, projectile EVERYwhere after EVERY feed. Was on meds until his first birthday. ds2 was silent reflux, very very poorley, his osophagus was damaged and had alot more meds than ds1 until he was about 2. I will say however it defintely gets better as they grow!

OpheliasWeepingWillow Thu 22-Nov-12 12:17:56

She is 9 months now

purplerainbow Thu 22-Nov-12 12:29:22

Forgive me if at any point it seems like im being condescending ok?

My 2 were both definetly worse when they had their jabs or a cold or new teeth came in. So that is normal although i know it doesnt help you i guess you can be prepared for that. With food, i found both were betting when i started weaning, so both were on solids by 4 months. However, eating was sometimes difficult, sometimes they would refuse to eat or be grumbly at dinner time. Do you know that there are quite alot of foods that make reflux worse? For example spicy foods etc, have a google. I found onion made both of mine worse. I also had to resign myself that they HAD to eat LITTLE and often. So compared to others their age they looked like they ate half the amount but actually they had more meals in a day? Is that something you have tried?

Also both of mine had various types of milk. Both ended up on medicated milk. I would also say they both are intolerant to dairy....what milk is your dd having?

With regards to trying to get her off the bottle, dont stress yourself about that! There is no right or wrong when to take them off it. d1 refused to take a bottle from 9 months whereas ds2 had them till he was 2!

I also had bad pnd with both of mine and i know exactly how you are feeling. you get yourself so anxious and so wound up about it and it turns into a vicious cycle. What never helped me is that everyone elses babies were healthy and happy and slept all night!

Dev9aug Thu 22-Nov-12 12:36:13

what medication is she on?

DS2 suffered from milk allergy and reflux. the only thing that worked was omeprozale combined with domeperidone. I would ask you to go to your GP/Paed and insist on it.

Are there possibilities of allergies? DS2 is being DX with gluten and dairy intolerences, since going over to g&df his reflux has all but disappeared- might be worth asking about it?

Ds1is being tested for dairy allergies and he had severe silent reflux until he was 1.

Also, are the medicines being dosed correctly along with weight?

It's so hard to know what to do, but you're doing what you can!

OpheliasWeepingWillow Thu 22-Nov-12 12:52:29

She's on Nexium which has been really good for her. We have tried all the others over the course of 6 months includin zantac at an adult dose and this works best. She has been doing SO well recently so I guess this has just brought it all up again for me.

We tried Neocate for 6 weeks - she got worse. We tried HA / Pepti formula but no difference.

Basically the dr says take the meds (hers!) and wait it out.

We did have a barium meal which showed her sphincter in her stomach is still under developed.

Maybe I need to work on my issues with her feeding. It's just so upsetting when she is clearly hungry yet vomits when she sees the bottle. sad

scarletforya Thu 22-Nov-12 13:01:19

Oh poor you OP. You seem to be trying everything I was going to say. I definitely agree teething/jabs/bugs etc make the cursed reflux worse.

I use Infant Gaviscon which I find very good, not sure if you've tried that...?

Try not to be too hard on yourself, it's not your fault and no way are you failing her. Reflux is just a tricky *** of a thing, you can do everything right and they still suffer. I feel for you. Hope today gets better. thanks

PipCarrier Thu 22-Nov-12 13:02:41

Has your dd been checked for tongue tie? Tongue tie causes reflux and some of the symptoms you've mentioned.

Check here for info:

tongue tie

MillyMollyMardy Thu 22-Nov-12 13:05:50

I feel for you. I have had 2 with reflux. Ds (5) has just had a stomach bug and it set his reflux off again but after a week and some Ranitidine he's back to normal.

It does get better. I remember saying to the consultant shouldn't he be better by now and getting the reply most are but there are always exceptions. Your daughter will improve and her sphincter will strengthen.

Small amounts often...

Chockywockydoodah Thu 22-Nov-12 13:08:50

My DD had silent reflux from about 4 weeks. I read up about it after instinctively feeling something was wrong after her feeds. I tried infacol and gripe water (thinking it was excess gas) then infant ga is on was prescribed (which had no effect at all).

Silent reflux is where they don't throw up and out, they swallow it back down so the acid burns twice, coming up and going back down again. it took many many different trips (and GP's) to get them to begin to acknowledge her issues, some GP's had to look up the details of infant reflux on the web in front of me in the surgery as she had not covered it at medical school). our main symptoms were; hiccups after feeding, fussiness when laid down soon after a feed, prolonged winding, pulling off bottle/breast, feeding voriouciously, spit up after feeds, hoarse crying and snuffling when laid down, dried milky deposits round side of mouth and pools of milky deposits on the cot sheets after being laid down, coughing and gagging and trying to fit her fist into her mouth to stop the acid burn.

it took a trip to A&E by ambulance to get her diagnosed officially and put straight onto Domperidone (stomach emptier) and Ranitidine (acid suppressant). She took these meds before feeds from 3 months to 16 months and the amounts were increased with weight and then gradually decreased as she got older and solids helped keep the acids down. I never wanted her to take medicine at such a young age but the difference they made to her every day demeanour was amazing.

I also wondered if it was milk intolerance/allergies but none of the heavy thick milks made a difference. The main thing I was told was that she (and a lot of children) had an immature muscle sphincter that is supposed to close (to prevent liquid and acid coming back up the oesophagus) when the food has gone through and into the stomach. this muscle sphincter would strengthen as she got older, thus lessening the symptoms of reflux.

like a previous poster said, there were many foods I didn't give her after reading that they produce excess acid in the stomach; spicy foods, tomato products, apples (except Golden delicious) all citrus fruits, peppers, onions. I substituted leek for onion in any prepared dishes such as shepherds pie etc. Meals were pureed at first then gradually smaller to larger lumps introduced. Then she took to finger foods and BLW with vegetables always part cooked, never raw. I now feed her anything and everything and she eats very happily!

I also didn't want to sound condescending or anything. Just wanted to tell our story to let you know that it does go away.

Insist on getting the right treatment from your Dr.

PanicMode Thu 22-Nov-12 13:43:36

I have had four with reflux to greater or lesser extent, and it's SO SO hard. Everyone has said everything I would have said - particularly with regards to getting the right treatment from your doctor.

In the end I removed dairy completely from my diet (was breastfeeding) and as far as I could from their diets and that, coupled with the medication seemed to help. I know it doesn't help when you are in the middle of it all, but it DOES get better as they get older and their digestive systems mature.

imogengladhart Thu 22-Nov-12 13:54:33

Message withdrawn at poster's request.

Pleasenomorepeppa Thu 22-Nov-12 13:59:12

DD had silent reflux. It really is horrid. We took her to a Cranial Osteopath & it definitely worked for us. Along with Gaviscon.
She still occasionally see one now as she still suffers with reflux. She's 3.6.

I don't think it's already been said but

This too shall pass

Seriously, it will.

I know it takes longer for some than others, but our DS had hideous reflux, thickened milk and domperidone and ranitidine for months and months. THings got a bit better when we took him onto Aptamil Pepti, then a bit better again when he could sit and crawl, better again the more solids he ate, until bit by bit he was off his meds and i'd forgotten about the last time I worried about it.
Until this week that is, when he's been ill and every time he coughs he vomits PINTS of milk or puree (he's 14mo but we've taken him right back to milk and stage 1 type purees for the week) just like the old days. The stack of 400 mussies has been dug back out again and the washing machine is smoking...

Oh and if anyone gets on your case about baby led weaning or anything else, seriously just tell them to fuck off. I wasted a lot of time feeling guilty about things I had no control over. You do the best you can to deal with a hideous, if temporary issue, and if that involves drugs and restricted volume bottles and a fixed feeding scehedule and propping your baby upright in a bouncer or whatever, that doesn't make you less of a parent than anyone who breast feeds on demand/blw/attachment parenting yada yada. It means you are working even harder, just under tougher circumstances, so be nice to yourselves.

PickledGerkin Thu 22-Nov-12 14:28:34

I think it is so hard because feeding your child is the most basic thing we do.

Both my sons had reflux. In fact I hate to tell you this but Ds2 is now 6 and still refluxes but only at night, despite gaviscon. He and us, have learnt to deal with it. He has water by his bed in a sports bottle. Ds1's reflux improved massively when he was upright and mobile.

Personally I went down the whatever works route. We were advised by the paediatrician to wean at 4 months which we tried and were unsuccessful with. So we left it and did baby led weaning. We were told to try starchy foods that would be thicker in the stomach and less likely to come back up.

Ds2 still eats smaller meals than his peers but is gaining weight healthily and steadily. Before he started school he ate 5 meals a day, was incredibly fussy as he was scared of trying new foods. He drank a hell of a lot of water too.

The only advice I can give is, if your daughter is usually okay on the meds and it is just jabs and teething that upset the routine, then I wouldn't stress it that much. Everything seems to go on forever but when you look back you see it is such a small amount of time in the grand scheme of things.

I know it feels like hell on earth, I remember Ds2 having between 10-12 feeds a day at 4 months old but the Health Visitor didn't care because he was gaining weight. He had 2oz bottles and then arched his back and refused any more milk but would gulp water down. Broke my heart.

Chockywockydoodah Thu 22-Nov-12 14:35:24

pickled can I just ask how you know they are refluxing at night still once older? What are the symptoms? Coughing upon waking/lying down per chance?

Some0ne Thu 22-Nov-12 15:29:00

OpheliasWW, my little guy is the same age and it's easing a little. He's still on medication but he no longer roars and screams at the sight of a bottle, and he sucks down 8oz bottles 3 times a day (or more often, sometimes!) like a pro. He's gone from pushing the bottle away to enjoying holding it himself while he drinks.

I can't begin to describe the relief. I spent months crying every time he was due a feed. I was relieved to go back to work 3 months ago because it meant someone else would have to deal with the bottles. It's a really, really difficult thing to deal with.

But it does go away. Hang in there, just take it one feed at a time, and don't worry about one set back. If she was doing great all day aside from one bottle, I'd regard that as a great success!

Teething, vaccinations, illness and stress do all make it worse, so don't worry about that, it's perfectly normal.

About the 'little and often' thing: we were told by DS's paed to do the opposite - bigger bottles, less frequently. And you know, it worked. He gets on much better when his tummy is given a chance to be empty for a while between meals. I find that odd, myself, because my reflux gets worse when my tummy's empty, but every case of reflux is different!

noramum Thu 22-Nov-12 16:07:06

Poor you. DD had silent reflux and we had screams after every feed after I actually realised what was actually going on.

I breastfed and what made it better was the following changes in MY diet:

no dairy unless it was cooked or treated. So I could eat cheese and drunk latte but couldn't eat yoghurt or drink pure milk

no acid food including fruit

all food was mild, no chilis allowed.

DD is now 5, I think she outgrew it around 6-7 months and has no food issues at all. But she wasn't a good eater until she was 9 month, I think she remembered the issue of pain after a feed so didn't took on solids too well.

We also had her upright for at least 1/2 after every feed. And I carried her a lot generally to make her as comfortable as possible.

narmada Thu 22-Nov-12 16:23:51

Wondered how you were getting on ophelia's. Sounds like you have ruled out the milk protein allergy as a cause and that it might indeed be GORD plain and simple.

I seem to remember things got much much worse with DS when he was ill with infections etc. No words of advice but just much sympathy. It is extremely stressful having a child who won't eat. I know about 3 people whose babies have had feeding aversions, plus me, and none of us have escaped the clutches of PND. I don't think that's surprising.

Don't ditch the bottle unless there's a good reason - is it something the dietician or feeding therapist has advised?

Both mine had reflux although this was 14/ 16 years ago and no one put a label on it then. Both breast fed.
They never had any ill effects or drugs. They gained weight and were healthy. Just threw up all the time. It was just a major laundry problem. As tiny babies I used to lay them on layers of bedding so I could peel away layers during the night as they got wet rather than doing a full bedding change.
We had Lots Of Bibs.
They both threw up 24/7 until 10 months. As others have said, solids made no difference. It was a bit like having a puppy as they would do piles of sick as they crawled around. The house smelled permanently of floor cleaner.
When I had DS2 the paediatrician told me to wean him at 6 weeks. I ignored him as I had already experienced the whole thing with DS1 and knew that it was nothing to do with what they ate or drank, just an underdeveloped valve.

Some0ne Thu 22-Nov-12 16:47:15

SecretSquirrels, it's great that your kids didn't need medication but that's not always the case. The OP has stated that her daughter is tiny and refusing feeds - in cases like that, the condition needs to be dealt with.

My DS refused point blank to eat because it caused him too much pain. He had to be tube fed for his first 3 weeks while they messed around trying different things. It was only when we thickened his bottles and put him on Losec that he stopped plummeting down the centiles. Sometimes medication is absolutely necessary.

tangledupinpoo Thu 22-Nov-12 18:38:26

Ophelia, when you say "she's TINY", how small is she - ie what weight? Was she born small?

I sympathise with you. My ds had severe reflux and is still on Losec (omeprazole) aged 5. The Losec worked well for us - as did Neocate but not Neocate advance which he was horrific on. I thought domperidone didn't make much difference.

My ds also got much much worse with food tolerance whenever he was ill. Eating/feeding went out the window pretty much.

He also had bad feeding and weight issues and it was absolutely dreadful. It's the most natural thing in the world to want to see your baby eat, grow and thrive. Be gentle on yourself.

Sorry haven't given much (any!) advice here, you seem to be doing all the right things, it's just really really hard.

It's so hard. Silent reflux and omeprazole here. We were one of the lucky ones - weaning has helped a lot. I took her off omeprazole at 6 months as she literally never slept whilst taking it.

Illness and teething do still cause relapses though.

Have you found the littlerefluxers website? Amazing support there.

Also there is a book - 'Colic Solved' I think it's called which helped me.

You have my sympathies.

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