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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.

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.

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