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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.

Wheresmypopcorn Thu 22-Nov-12 19:44:33

OP, reflux is so hard, my little one had it and I constantly had vommit all over me. It's extremely hard to cope. I would advise that you get out of the house. It's easier to worry about food times and have them be stressful. I found that being outside would calm me down and I also met another mum with a reflux baby in the doctor's office. Start connecting with mums that are in the same situ as you. I initially found it very stressful to take her out to other people's houses as she would just vommit and all the other mums didn't understand. It was a huge help to eventually meet mums who had reflux babies and we could cope with it together. That, and buy yourself a few more tee-shirts and keep a spare in your baby bag. I am happy to say that my DD is now older and very happy and has gone up to the 50 percentile of baby size, when up until a year old she was always in the low 25 percentile. Her weight is no longer an issue and I no longer smell like vommit!

Oh I remember that Wheres. I'd go to baby group, have finally got both twins dressed, out hte house, sat on the play mat not crying, and someone would go "oh no, your baby's been sick!". I'd leap up expecting to see the usual rivers of regurgitated milk, and there would be this tinsy tiny bit of spit up in the corner of their mouth. I always got disapproving looks when I said "oh that's nothing!".

Chockywockydoodah Thu 22-Nov-12 19:57:16

Yes the colic solved book was my bible and my saviour (actually got it back out tonight too)! So much useful info in there even if it is American. also the sitting upright in a non slouched position after a feed and after long winding (rubbing back in circular motions not parting) helped.

Feel for you, I remember those days so clearly . Hugs x

racingheart Thu 22-Nov-12 20:13:47

Hi Ophelia,
You have my deepest sympathy. Reflux and FTT was the hardest thing I've ever had to face in my life - I ended up with severe PND. Ours wasn't over until he turned 4.

But it does end. Now he's 10, a really solid, muscly rugby player who adores his food and cooking. Until he was 4 he barely ate enough to live. When he started school he was almost bald with that translucent baby hair and he wore age 3 shorts was trousers, he was so tiny. People used to gasp when he trundled into the hall at assembly. Just telling you that even if it is severe and she doesn't grow out of it for ages - it isn't forever, and it doesn't have to mean any long term ill effects.

Best tip I was ever given, (by another mum) which no medic suggested, was to feed them straight away after they've been sick, just give a new feed, small amount. Instead of following standard feeding patterns, do little and often. I fed DS2 every hour. Keep her upright as much as possible. We never did 'tummy time' because he was in agony, so he sat up in his buggy or rocker as that stopped the pain. He even slept more easily in that position. We were shown how to burp him on our laps, rather than against the chest, as the pressure on the stomach can cause vomiting.

We were told to move onto solids asap and feed them almost continuously in minute amounts. I used to tuck food into his mouth while he played because if he didn't notice it, he was more likely not to refuse it.

Allow more treats than usual - I offered lots of biscuits and ice cream because it was so important that he learned to equate food with pleasure and this was the only way i could think of.

Also, offer full fat yoghurts, add cream to purees etc, so that even if she arches and screams after two spoonfuls, you've given five times more calories in those two mouthfuls than if it had been healthy stuff.

As long as she tolerates something from each key food group, don't fret about variety. My DS lived for years on nothing but soft brown bread, mild cheddar, yoghurt and slivers of peeled apple. Once I finally knew it was habit not physical, I got tough and now he's less fussy than DS1 who ate everything.

Sorry, this is really long. I feel so much for you. It's vile, But it will pass.

englishbreakfast Thu 22-Nov-12 20:48:04

Have been there, it's horrid. What made it worse was the lack of understanding from people around us and other mums, who just didn't get it how difficult it was. I also had PND which was directly related to DD's feeding issues. I BF'd and was on various elimination diets for months, DD has gone through max doses of all the meds available and still, even though the meds controlled her reflux and she wasn't in pain, she developed feeding aversion. I really didn't believe the paed who kept saying she'll grow out of it by 1 yo. She did and was off the meds by 10mo. The improvement wasn't very gradual, although we could see it was getting a bit better, but then it happened quite quickly, so your DD may well grow out of it very soon. But, yes, as others said, some children take much longer, but as I understand, that's an exception not the rule. I started giving DD other dairy (yogurt, cheese) when she was about 7 months to bump up her calcium and calorie intake (we knew by then she wasn't dairy intolerant), and that worked well for us. If she can tolerate dairy, add butter to her food for calories and also mix some Flax seed into her food. It's high in fiber, essential acids such as Omega 3 & 6, and lots of other stuff which is good for the baby. It's also quite high in calories so again, will help with the weight. Babies can be given it from 8 - 10mo. Just hang in there, it really will get better.

englishbreakfast Thu 22-Nov-12 20:54:39

sorry, just to add, and I'm not sure if you are on ADs for your PND, but I took St John's Wart and Relax (herbal tablets with a high passionflower content, which you can get from Holland & Barrett). The combination worked great for me, I only wished I started it much sooner. It might be worth a try, I'm sure they'll help you somewhat. I just felt much calmer and more in control of my emotions after taking the tablets for a couple of weeks (I took them for about 6 months and then just stopped cold turkey with no adverse effects).

stargirl1701 Thu 22-Nov-12 21:00:11

Oh god. My LO has just been diagnosed with silent reflux at 10 weeks. We were given Ranitidine which seems to working. I had no idea this might continue after weaning. sad

swanthingafteranother Thu 22-Nov-12 22:56:05

Just to reassure you Stargirl my dd had reflux which continued to 10 months, but it was much milder after we started solids, at doctor's rec, at 17 weeks. So she was still throwing up after some feeds but she wasn't in pain.
Before 17 weeks she would not be put down after a feed. We had to hold her upright for 3/4 hour, and she would not sleep if you took her for a pram ride etc, just screamed. She now has no issues, besides being slightly fussy about food, loves milk, and very tall and healthy at 10 years. We used Gaviscon, which someone explained to me isn't an instant cure, but slowly lets the aesophagus heal itself. The pain is caused by ulceration, at the acid - so if the acid is kept at bay (gaviscon thickens the milk so it doesnt come back up so easily), in time the feeds become less painful for the baby. She had both breast and dairy formula, and wasn't allergic to either.

stargirl1701 Thu 22-Nov-12 23:40:37

Thank you for the reassurance. She seems so much happier over the last week since we started the meds. We're also seeing a chiropractor. It's so hard watching her in pain.

fraktion Thu 22-Nov-12 23:57:28

I really feel for you. It's so miserable seeing them in pain sad

We managed DS in a pretty AP way by him being permanently attached to boob or upright in a sling or proposed up on one of our chests. Every time we lay him down the acid went up his throat and he would squeal. The HCPs just wouldn't believe anything was wrong because he was gaining weight....yes, because he was constantly eating because by swallowing the acid stayed down and cleared out his tummy hmm

It does ease. We still have acidy days, and occasional squeals if he turns onto his back in the night, but at 19mo it's so much better. We didn't have it as badly as you seem to but I remember all too well the feeling that he should have outgrown it at some points.

sleepywombat Fri 23-Nov-12 04:35:02

Both mine had/have silent reflux. It's terrible.

DS1 just magically grew out of it at 8 months, after nothing working. We tried gaviscon, zantac, losec, homeopathy, chiropractor, osteopath...He has never suffered from it again, even when sick/teething.

DS2 - Also tried everything. Losec (omeprazole) made him completely & scarily hyper/unable to sleep. Solids made him a million times worse - every food we tried gave him diarrhoea & worsened the reflux. We found out he had eosinophilic colitis & oesophagitis, a.k.a. multiple allergies causing autoimmune disease & was allergic to my breast milk. He was put on neocate. Improved slightly, but still acid breath, gulping & screaming at night. Started GAPS diet to 'heal' his gut (it says & I now completely believe that reflux, allergies etc result from weak digestive systems & leaky guts partly due to genetics but also because of all the sugar, preservatives, medicines & toxins in our diets & in the air). The first week off neocate & on the diet, his reflux & eczema were gone & he was sleeping so much better at night. Unfortunately the reflux did come back last week with teething & Roseola virus.. but hoping as he gets older & heals more, this weill stop. He is now 'tolerating' six foods too - woo hoo!

So I guess my only advice would be the same as others', to hang in there. DS2's 'disease' is rare, so don't worry! Do give your dd probiotics though, especially if she is on the meds, because good bacteria is apparently what a lot of reflux babies are lacking.

I think if I did it all again, I would not eat sugar or processed foods at all when pg or bfeeding & take probiotics daily. I'd also ensure that I never cleaned etc with chemicals during the time. After 2 reflux dses, I don't think I will do it again, however!!!

PETRONELLAS Fri 23-Nov-12 07:22:39

Know you're happy with consultant but if needing a second opinion I would recommend Warren Hyer and trust him 100% - paediatric gastroenterology is his specialism and he has the nicest way about him. Hope everyone's comments have helped you feel less alone.

OpheliasWeepingWillow Fri 23-Nov-12 09:35:15

Wow! So many replies. It's crazy how many babies have the same problem. Reassuring, but I also wish it didn't exist.

Today has been an insane game of 'spring the bottle on the baby'. It would be funny if not so tragic. Basically I sit on the bed and show her a lovely happy cartoon then pop! There's a bottle in front of her. Has worked better than yesterday but she's not drinking much and crying a lot.

A week ago she was begging for 8oz bottles 4 times a day so I need to keep some perspective. She's been upright all day and I'm back to putting Gaviscon in her feeds. We were using Xanthan gum but the gloopiness sort of made it pool in the back of her mouth and made her gag even more.

Every feed is preceded by me literally SHAKING at the moment as there is such a fine line between her drinking and her screaming / vomiting / gagging.

Solids not so great either (cartoon city) but two months ago she wouldn't take any. Just seems to be 2 steps forward and one step back, sometimes all the steps back.

Wish I had never stopped breastfeeding but I had to take 2 category X drugs. If I had know this I never would have taken them, my health be damned as the bottle saga is horrible.

As for weight - she's about 7kg but I have refused to have her weighed every 2 weeks as the dr would like as there is NOTHING to be done about her eating that we are not already doing. Her formula is mixed to 24 cals / oz, I feed her avocado and add olive oil to her meals (such as they are) and she constantly pulled out her feeding tube when we tried that.

If another nurse or well meaning individual tells me to feed her more I will bop them on the head with a glass jar of baby food. Now my response is just, 'That is BRAND NEW information' said in a very sarcastic voice.

Iggly Fri 23-Nov-12 09:41:53

How much are you feeding her in one go? Feed her little and often. Don't let her get increasing hungry and distressed. Every 2 hours you should feed - be it solids/bottle but only small amounts

Try making her more relaxed. Feed her in a sling, carry her, sit her outwards so she can watch something else. Try and relax yourself too.

If her sphincter is under developed then surely they need to consider doing something about it????

Iggly Fri 23-Nov-12 09:43:10

<waves to sleepy!!!>

OpheliasWeepingWillow Fri 23-Nov-12 11:25:14

Hi Iggly we tried less often but just did not work. She will only take the bottle when hungry if at all.

All babies sphincters are underdeveloped but they develop over time. My dd's just needs to catch up.

ninani Fri 23-Nov-12 12:23:50

Sorry, I have nothing useful to say but I remember my sister having it. My mum would come to check us at night and she was in her bed, so she was definitely over 2 and would find her soaked in vomit sad I remember our mother in the middle of the night undressing her, having to wash her, change bedsit, wash the mattress, blow dry her etc. It lasted to some extent until she was at least 5. She would refuse to drink milk until a specialist doctor gave her a special milk with some chocolate and somehow managed to convince her to drink it!! I always thought it was that milk he gave her that made her get better confused

So yes, it can last longer. My sister can now eat and drink anything.

tangledupinpoo Fri 23-Nov-12 13:11:59

Iggly the op to tighten the sphincter (fundoplication) is pretty drastic and can cause as many problems as it solves. My son was suggested for it and one doctor was very pro, but DS's gastroenterologist very very anti. He was very firm about treating it just with meds and time. (Said as babies become upright (learn to walk!) at upwards of a year, this can often have a beneficial effect on reflux.)

Sleepy my son was pretty hyper and needed very little sleep, I always thought it was just him, or maybe the neocate?! Funny that I didn't think of the losec. Doesn't sound like he was as hyper as your ds though.

Ophelia it sounds like your DD's weight is ok - sorry to ask quite insensitively. I know it's a big anxiety, the dreaded weigh-in. I was asking because babies who are born small and don't immediately start to catch up can have issues with food / appetite alongside reflux. This is something no paed in the hospital explained to me (my ds was IUGR) and even when he was referred back to a paed for failure to thrive, no-one identified as being linked. In fact I was told it was an unfortunate coincidence. Obviously doesn't apply to your DD though, sorry.

autumnmum Fri 23-Nov-12 13:19:32

Oh I feel for you. My DD had silent reflux and was failure to thrive. I had a horrendous birth with her and then couldn't breast feed and then she screamed all day and night long. It was awful and I felt like a complete failure as a mother. She was on Losec which worked for her. Whilst she was gaining weight we had to feed almost constantly during the day, but little and often, rather than monster sized feeds. Once she got onto solids proper the problem sorted itself out. I ended up carrying her around in a front pack sling most of the time as she could only really get comfortable upright. I also put a foam wedge under the change mat so she was at an angle for nappy changes which did make a difference. At night I put her to sleep on her side using something called a Safe T Sleep. We lived in NZ at the time and this was recommended by her paediatrician, but I don't know if this would be considered controversial here, so I'd talk to your HV before trying it.

The happy ending is she is now 7 and on the 95%ile for height! She eats like a horse and shows no ill effects from being failure to thrive. I also had another baby and he was fine. Hang on in there it will get better!

imogengladhart Fri 23-Nov-12 13:26:36

Message withdrawn at poster's request.

Iggly Fri 23-Nov-12 14:24:18

Ah I see tangled

My DS didnt really grow out of his reflux fully until closer to 2 but even now his digestive system is easily upset. He's getting better at 3.

DD (11 months) still has silent reflux issues made worse by tongue tie and I suspect she'll be similar to DS.

FontSnob Fri 23-Nov-12 21:58:53

There used to be an excellent reflux thread in the breast/bottle feeding section. Worth a read. Can sympathise totally, it is a bugger.

narmada Fri 23-Nov-12 22:25:45

Ah fonts, sure I recognise your name from said thread. How are you getting on? Sorry for hijack.

gomummygone Fri 23-Nov-12 23:10:37

Really feel for you, OP, it is so hard. DS had horrible reflux, and nothing really helped it but time. He grew out of it, almost overnight, as our GP had said that he would. I was shocked.

He was EBF and I always felt that it was a bit worse when I had eaten certain things; do you think your DD may have an intolerance to her milk?

I think everything we tried has already been suggested. The only thing that noticably helped DS was keeping him upright as much as possible. I carried him in the front carrier (so he was looking out) almost all day once we discovered this. Literally every single day.

Repeating I know, but "this too shall pass."

OpheliasWeepingWillow Sat 24-Nov-12 06:00:08

Oh I hope it will pass. Spent half an hour getting 60ml into her then a hour waving a spoon laden with fish pie only for her to spit out every mouthful.

The doctor says she will always make up for it which she does when the flare passes but until then I am always a wreck.

englishbreakfast Sat 24-Nov-12 12:56:38

I don't know if anyone's mentioned this, and please don't shoot me down for suggesting this, but we found that the only way we could get some sort of reasonable amount of milk into DD was if we put the cartoons on for her while feeding. This is the only thing that worked for us, without the distraction, she would only drink / eat miniscule amounts regardless of how long it's been since the last feed (getting her hungry didn't work, she could go for hours with nothing...) and feeding her in front of TV really helped during those most difficult months. When we thought she was sufficiently better, we just stopped putting TV on during meal times and she's been fine eating without any distractions since then and loves concentrating on her food now... I know it's not going to be to everyone's liking but it worked for us and I don't feel bad about letting her watch quite a bit of TV during feeding times because at least she was getting the nutrients she needed...

slatternlymother Sat 24-Nov-12 15:41:51

My DS' reflux definitely got better with his first birthday and the advent of him walking (he was a late walker; 14mo at first attempt). Unfortunately because he was a so called 'happy spitter', the doctor would give us nothing.

Every feed, and I mean EVERY feed would be followed with vomiting. He just seemed incapable of keeping milk down. A 2oz feed would take 30 minutes when he was under 3mo and all of it would come back other than what he had managed to absorb in that time. Keeping him upright helped a bit, I suppose.

Weaning was hard, hard work. I had to eliminate all food that could be stodgy; so bread, potato (esp mashed), fibrous veg like parsnips, cheese, cake, spreads, most meats, cream etc. But things he did love were pasta shapes, soup of all kinds (got veggies in here), toast, apples, yoghurt were all good.

He is now 2 and through trial and error, age and nursery (they copy their friends), he is a less fussy eater than I am. He only weighs 9.5kg which is only just enough to go in a forward facing car seat! He still eats teeny tiny amounts somedays, but I just have had to learn to shrug and take the plate away. Later on, the gagging he did was probably out of fear of gagging, if that makes any sense. Both my DH and I had to learn (and it's so hard) not to react in a negative way at all. Just to say 'oh dear, poor DS'. Which is really hard when this has been happening for nearly a year.

I just had to make sure he stayed hydrated with plenty of water in between times, just to comfort myself as well when he was sick.

It does end, from experience you are so nearly there.

messtins Sat 24-Nov-12 16:38:02

It's awful. DS is 2.5 and we are largely over the worst, but we STILL have flare ups with jabs, colds, teeth.... and it plunges you right back to the darkest days.
If you haven't already got it, the book Colic Solved is brilliant despite the stupid title, and the Little Refluxers support site has kept me relatively sane.

OpheliasWeepingWillow Sun 25-Nov-12 03:59:16

EnglishBreakfast well I'd have to be flamed too as every feed (bottle or food) is accompanied by some damn cartoon or other. It's very rare that we don't need it to be honest. She just sees the bottle as the enemy otherwise and won't even try and latch on.

Helps her when she is gagging too - takes her mind off it. You can SEE her concentrating on watching and not gagging. Makes feeding her in public tricky to be honest and I dread the 'will she / won't she' drink question. She'll also go for hours and hours without demanding food or milk. Is stressful to say the least.

messtins I will go get a copy. Anything that will help! I was on Little Refluxers for a while but it sort of depressed me.

slatternly so difficult isn't it? My dd was born on the 50th centile and has slid down down down. I have a honey bear cup with straw which she will take water from thank god.

OpheliasWeepingWillow Sun 25-Nov-12 04:03:49

narmada no advice to wean from bottle but for my own sanity :-)

I know she needs it. Sigh.

RunningOutOfIdeas Sun 25-Nov-12 04:56:15

I am currently holding DD2 upright after feeding. DD1 also had silent reflux that was worse after bugs, jabs and teething. She did improve with weaning and being more upright. She is now 4 and has omeprazole twice a week. This seems to just about keep the reflux away. I was told that 90% of refluxers grow out of it by 6 months, 95% by 1 year and 99% by 2 years.

DD1 can now tell me when she has reflux. She will get herself some water to wash it back down and is happy to take her meds. So even if the reflux doesn't go completely, it does get easier to manage.

DD2 vomits more than DD1 did. She is 7 weeks and on Gaviscon. I am going to ask for ranitidine next week. I had hoped that Gaviscon would be enough but she seems to be getting more uncomfortable and the vomit is travelling further.

slatternlymother Sun 25-Nov-12 14:33:38

Interestingly (and I have NO idea why) DS has never vomited his cows milk. I was terrified of it as well.

OpheliasWeepingWillow Mon 26-Nov-12 09:03:32

Does anyone have any tips on managing the constant anxiety that reflux / silent reflux causes?

I worry about:

Will she feed in public? Mostly not as too distracted.
Will she gag so hard she is sick?
Have I spent long enough trying to get her to take the bottle?

The irony is that she mostly does drink 500-800ml a day of fortified milk (24 cals) plus 3 small meals and sometimes rusks / toast but it's the sheer EFFORT that is takes.

CocktailQueen Mon 26-Nov-12 09:25:27

My neice has just turned 2 and has bad silent reflex. She is on domperidone, gaviscon, ranitidine, sleeps with her cot titled up. She is much worse when teething too - it increases the amount of acid in the stomach, doesn't it? My Dsis keeps having the dose increased as her dd grows. She has tried reducing it but dd obvs isn't ready for this yet as the reflux gets worse again. Hang in there - sounds terrible at the moment but it will get better.

autumnmum Mon 26-Nov-12 13:12:28

Ophelia your post reminded me just how awful having a child with reflux is, and I haven't been in that situation for about 6 years. I saw my gorgeous DDs weight fall from the 75th to the 3%ile so I know how emotional feeding can become. I felt like I was being rejected, which is nonsense but when you are tired and worried it is amazing what idiotic thoughts you can have. Is your child still classed as failure to thrive or is she putting on weight now? If she is gaining weight I would try not to watch everything going into her mouth. When I had my DS I was able to BF him for 12 months which after the horror of not being able to feed my DD was amazing. However, after having a child where I knew down to 1ml how much she had had, to have a baby where I hadn't a clue how much they had drunk was really difficult. However, as he was gaining weight I just had to rely on that.

I remember feeling that my life would revolve around no sleep and constantly being worried about weight gain, but it does pass. Now I spend all my time supervising homework and ferrying the kids from one sports field to another smile.

OpheliasWeepingWillow Tue 27-Nov-12 04:25:09

Her intake has gone down to 300-400ml. Have emailed This Chap to see if he can help despite the fact that I am not in the UK. Miserable.

fraktion Tue 27-Nov-12 10:26:16

ophelia whereabouts are you? I have the name of a specialist in France.

englishbreakfast Wed 28-Nov-12 20:45:54

If your DD's issues are due to her sphincter being underdeveloped (as you say the barium tests showed), then tbh there is little you can do other than adjust her meds to the level that would make her comfortable until her sphincter matures. What meds is she on, is she taking Omeprazole or Lanzoprazole, these are the best ones for acid suppression but you sometimes need quite high doses (but not more than max allowed for babies that age), but the doctors can be quite conservative in their dozing when actually research shows that Omep and Lanzoprazole are quite safe for babies even in high doses.

I used to hate feeding DD and experienced severe anxiety, anger, depression, just a lot of horrible, negative feelings about the whole situation, so completely understand what you are going through. But it does get better with time and it will do for you.

OpheliasWeepingWillow Fri 30-Nov-12 13:22:36

Thank you so much. I am in Asia and have a ready store of Kalms.

She is now back on 600ml and I am a nervous wreck. Going to see the specialist in February and try and push for better drug therapy but my consultant is super conservative with treatment and basically says I need to calm down sad

Lilsabeth Mon 28-Jan-13 20:55:18

Hi all,
My little one is 8 months now and is luckily growing out of his reflux. However, a client of mine has a baby who is only 2 months old. She had it really bad too, her baby wouldnt settle AT ALL. They gave him all the meds possible and kept increasing the dose, nothing would work. So they researched it online and apparently in the US and Australia they would recommend a Chiropractor. So she searched for one near us that would work on a baby. He said its caused by long deliveries, the baby started crying after a while and the guy said its ok hes not in pain just hungry, go and feed him. It was the first time he fell asleep during a feed!!!!!! 48hrs later he was like a totally different baby. As far as I know he's never had an issue with it again. WOW!!! Hope this helps

Bellaboo6 Mon 25-Feb-13 13:42:31

PLease help me get some perspective and calm! My LO is 16 weeks. She had always been a fussy feeder (EBF) but I have only recently twigged that it's silent reflux. It all adds up. She was coping fine until ten days ago when it started to bother her at night. She is only able to sleep comfortably on me, hence no sleep for me! I'm so distressed seeing her in pain. She is on gaviscon but it's hard to administer, especially if she has fallen asleep after a feed. I have just returned from the dr. I foolishly thought she would be sympathetic and helpful. She reluctantly gave me Zantac, but reduced the dose to 0.4 three times a day once she worked out the cost! She also suggested that my LO is addicted to sleeping on me and that is the real issue! Not the case since she managed to sleep fine for the last three months. Then she said gave me total mixed advice about feeding. I just feel so worn out, emotionally and physically. I'm wondering if I have PND. I am very emotional and can't seem to stop crying. Just so worried about my LO. My husband is loosing patience with me and can't stand it when I cry, which doesn't help. Feel quite isolated as I live away from friends and family. Crying on the phone to my mum isnt very fair but feel so alone. To top it off I have to take LO for jabs this afternoon. I feel we should wait a week but OH is adamant we do it. Don't have the fight in me! I'm crossing all my fingers that the oesteopath will help later this week.

Sorry for the mammoth post. Needed to get it all out. Does this get better? Soon? Xx

racingheart Mon 25-Feb-13 16:56:39

Ophelia, I haven't read your whole thread, just your OP, but had to reply. IO have HUGE symnpathy with you. DS2 had chronic reflux which resulted in severe FTT. As a result I had PND. It is impossible to understand, if you haven't been through it what an ordeal it is.

It is without doubt the toughest time I ever had, but it does pass. If you could see my FTT baby now. He was undersized for the first four years of his life - really tiny. I remember a friend who had her baby same time as I had DS2 then had a second baby and her newborn was bigger than DS2 at 20 months. I cried!

Now he's enormous! Tall for his age and in clothes one or two years above his age (having spent the first five years of his life in clothes a year or two smaller than his age. He is also now in the top set in his class, after being bottom of the class throughout infants (I'm sure linked to the reflux as he was so weak and tired) and best of all - he really loves his food.

But he didn't for years, I'll be honest. It was a slow process. Like your DD, he had bottle milk for ages after most DC are weaned, and lived on it in preferwence over solids. Nothing I could do. If I didn't give it to him, he didn't have anything.

So here's the advice I collected that helped and comforted me most:

It WILL pass.

Never take advice from or expect someone to understand unless they've been through it/are genuine specialists on the subject. Even health professionals. Only take advice from people who believe you when you say she just won't eat.

Try to eat with enjoyment near her.

Let her eat rubbish if she enjoys it (once she's at weaning stage.) What's important here is teaching that food can be a pleasure, not something to be frightened of. DS2 learned this from icecream!

and the best advice from my SIL was, if she throws up, offer another bottle straight away. Seems counter intuitive and it doesn't always work, but if she really is starving herself almost to death, as DS2 did, it's important to just get a few more calories in whenever you can.

And a trick I discovered by accident was to post food into his mouth when he wasn't aware he was eating. I cut up minute bits of anything he'd just about tolerate and tuck it in his mouth while he was playing. Bit by bit, it went in.
Then at meal times, I'd get out ice cream, so he learned that sitting up to table was enjoyable.

Sounds bonkers but normal advice just didn't work.

i really REALLY hope it passes soon for you both. Hang on in there. you feel like the worst mum in the world at the time, when in fact, however deep and dark the feelings go, you're actually doing your best in a really cruel situation and you're saving her life.

Sorry it's such an essay.

Clarella Sat 04-May-13 17:49:37

bellaboo how are you and lo? were you on the Dec 12 antenatal thread?

I'm here questioning silent reflux too. we has tt. and snip helped but issues still there particularly difficulty at night. I discovered that he sleeps better raised on a pillow. we're trying omeprozole since yesterday but it's really hard to get it into him so we can't be sure what he's getting.

mikkii Sat 04-May-13 21:37:17

My DS had reflux, I learned to do everything one handed and hold him with the other one! Lots of people have mentioned keeping them upright to reduce pressure on the valve, I bought a high chair that could recline so I would put DS in to feed, then keep him there playing, let him drop off, then could slightly recline him for comfort but still quite upright for reflux. Worked for us. He wouldn't go in our bouncy chair as too horizontal.

I also had a travel swing which was a godsend. If DS was ill he wouldn't settle at night (well, even worse than normal), on those nights we would let him sleep in his swing. I'm certain the swing was the only reason I survived his first year.

DD2 seemed to have reflux, didn't improve with weaning as I had been led to expect, turned out to be lactose intolerance.

Remember, you know your child, try some or all of the suggestions given, keep on at the gp for medication. Ask if their child would have drugs rationed forc ost reasons?

Good luck, and as said before, this too shall pass.

Neverending2012 Sat 25-May-13 22:47:14

My Ds has silent reflux, he's 5 months now. - looking back I think he had it from birth. Feeding was a nightmare as he would back arch and couldn't latch on. Midwives noticed a tongue tie at 5 weeks, he was loosing weight, cried constantly - 75 percent of the time. I took him to the health visitor, no one seemed concerned about lack of weight gain, the gp thought he had something wrong with his intestines, he was obviously in pain. We ended up at a&e and admitted to hospital and they said it was reflux and sent away. The crying/ shouting continued I took him to the gp again and again, he wouldn't eat as it hurt too much, eventually it got so bad I asked the gp to get us admitted to hospital for observation. He was failure to thrive . It turned out he had a weak suck. 10 days later after a heart echo, lumber puncture, ultrasound of organs, barium swallow, blood tests, where the doctors searched for all sorts of underlying causes and nothing has been pinpointed. His mri was normal. We then tube fed him through his nose for the best part of 2 1/2 months and he's bigger and stronger now. He's on domperidone, omaprazole, tried ranitidine. Gaviscon,. He's on neonate but no idea if he's cow's milk intolerant. The drs have done some genetic tests and we haven't had any results yet, they take months. Now that he's a healthy weight and climbing the centiles he sleeps well and is developing although I'm beyond myself with worry.
I'm weaning him and we see the physio as the back arching has had an impact on him.
I'm just exhausted and wish the reflux would go. It's just so horribly sad. We went to a&e 7 times n 4 months. Not really sure why I'm sharing all this, just wondering if anyone else been through anything similar ? Sad thing is little boy is in pain or upset, I have no idea what he's really like.

Neverending2012 Sat 25-May-13 22:50:48

He's off the tube now and sucks from the bottle without any problem now he's bigger and stronger

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