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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.

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

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.

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.

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.

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.

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

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

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

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.

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

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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...

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.

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."

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.

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.

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