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Advice & keep me going - silent reflux

(36 Posts)
PumpingRSI Wed 21-Aug-13 08:36:26

My LO is 4 months old and he was diagnosed at 6 weeks with silent reflux. Prescribed Gaviscon which was a nightmare getting into him as he would spit it out so expressed 2 feeds a day and put it in that. Seemed to work. About 3 weeks ago the symptoms were coming back. Told by my GP to increase the dosage of Gav and more often. I wasn't happy as I knew thus meant more expressing, but ok.... 4 days later he was so uncomfortable and started refusing breast in the day so went back to diff GP and prescribed Omeprazole. 2 weeks in and I think its making it better but not loads and he still won't feed from me in the day. He still needs Gav regularly in his feeds too.

I feel like my life is revolving around expressing, feeding, burping and washing all the equipment. I can't go out for longer than 2 hour slots as I need to come home to express and feed him. My DH and DM think I'm making life harder a nd should just formula feed to make it easier for myself but I've read that formula could be harsher on him.

I'm a mix of emotions and tiredness. Is the refusing def due to reflux? Should I just formula feed? Are the drugs working?
Has anyone else had this? Just to complicate things further, he sometimes feeds from me lying down in the bedroom - so is the refusing down to.somthing else like strong let down instead? And am I making this worse by expressing all the time.

Everyone said the first 6 weeks were the hardest, but this is way way worse, and starting to get personal! Has anyone any advice, insight or comforting words? Thank you.

JiltedJohnsJulie Wed 21-Aug-13 08:48:29

Think you need some RL help on this one Pumping? Has anyone ever checked Lo for tongue tie as this can easily be confused with silent reflux.

If you look on previous threads there should be some advice on silent reflux but I would speak to a BFC. Is there a Bfing Support Group you can get to? They should be able to check for tongue tie and talk to you about the reflux and hopefully ways to encourage Lo to feed from you.

Well done for preservering in what must be difficult circumstances.

PumpingRSI Wed 21-Aug-13 09:20:12

Thanks for this. Some of the info on tongue tie is ringing true, like the hiccouping and clicking / gagging when feeding. How do you go about getting this checked out and would you have to pay a private consultant to do this? I have a bf support group near me but its run by surestart and volunteers and I haven't been overly impressed by their knowledge so far. Esp as my issues are quite complex. Same with GPs who imagine id be like a mad woman suggesting tongue tie. Maybe I should give the bf group another go.

JiltedJohnsJulie Wed 21-Aug-13 09:45:09

I'm not an expert on tt, even though my DS has had it, think you need someone like mawbroon or tiktok really.

Think though that milk matters (in the link on tongue tie) do a virtual diagnosis service and yes, there is a fee for this. Another option would be to get in touch with your local lll. They should be able to help you with all of your issues and hopefully diagnose tt, if it is that which is causing the problems.

If there isn't a lll near to you, try one of the Breastfeeding helplines. Again they should be able to talk to you about getting him to feed from you, where to get tt diagnosed and expressing.

Did you know that you don't have to sterilise your pump each time? Could that help you out with time? Are you able to express while you feed, for the feeds he will take? Have you got a decent dual pump? Think that ameda will hire out the ameda lactaline and i think that the nct sometimes also hire out breastpumps. Perhaps it might be worth renting out a decent pump for a month while you get support and decide how you wish to continue? smile

ab00 Wed 21-Aug-13 11:38:10

So sorry to hear things are tough for you. Ds2 also had silent reflux which was diagnosed at 8 weeks. Gaviscon helped but ranitidine made the biggest difference for him. At 14 weeks he was diagnosed with a tt. I spoke to Charlotte at milk matters, discussed all concerns with her that I had about ds (for free) & she gave me the name c of a lactation consultant in our area who is excellent with tt. We were able to see the lc within 24hrs of calling her & it cost us £90 for the examination,procedure & follow up support should we need it although other lc's may charge differently. The lc also recommended a course of cranial osteopathy. Within a very short space of time ds was off all medication & was feeding much better. Silent reflux is awful. It may be tt is the underlying cause & it may not be, but it's definitely worth getting it checked. If you don't mind saying the area you're in I can give you the name of the lc we saw? Feel free to inbox me if you like. I remember what can only be described as the living nightmare that is silent reflux only to well - constant distressed feeding, lo & me in tears, life revolving around feeding, no sleep for either of us as he couldn't lie down without being in pain etc.

mawbroon Wed 21-Aug-13 14:51:09

Article here about reflux and colic due to ties.

I would also recommend the tongue tie babies support group on facebook. It's a closed group, but just ask to join. There is a lot of knowledge on there.

You need to find an expert. Most HCPs are not particularly knowledgeable about tongue and lip ties.

Helenc19 Wed 21-Aug-13 19:38:55

My 10wo has silent reflux and has a posterior tt and upper lip tie, I still trying to decide if to get them revised. I found this helpful

I would also recommend LLL helpline for advise and find out if they have a local group

Helenc19 Wed 21-Aug-13 21:17:45

Oh posted too soon, also I don't have the gaviscon box to hand but it doesn't have to go in milk, you can make it up with a little boiled water for breastfed babies. I don't think it tasted very nice but DS was happy to drink it but you may be better off trying ranitidine instead.
It is better to feed in an upright position rather than lying down but if you have a fast let down that's not the best position so maybe try biological nursing position

PumpingRSI Wed 21-Aug-13 21:32:29

Hi everyone, thanks for all the advice. Had a bit of a meltdown today. He barely fed and was also refusing bottle at times. Went to bf cafe, and they thought that he may be refusing because bottles are easier and milk takes longer to come thro when bf. So I went with that and gave him initial bit in bottle, lots of skin2skin and put him to boob, cue meltdown screaming, not just when he starts sucking but also when and after let down. Then refused bottle from me. So I think I've dispelled that theory. He is still arching and straining, but that could now be willful protest, wind or reflux so I'm no where nearer. My DH ended up feeding him and he downed two bottles like he had been starved. I'm in Nottingham area if anyone has recommendations but I don't know whether the problem is now medical, psychological or a combination. A bit exhausted and going another bottle now as I can risk (or be bothered) to have another feeding screaming session, even tho I may be making the situation worse...

PumpingRSI Wed 21-Aug-13 21:35:14

Just to.add, he roots and turns into me, is obviously hungry but then when he sucks and has nipple he gets v angry which he doesn't do with bottle. Also if he had tt, surely this would all have been a problem before he got reflux up to c. 7 weeks we had no feeding problems?

Overberries Wed 21-Aug-13 21:50:27

Sounds very familiar - BF and gaviscon are hard to mix! DD had tongue tie and reflux, got tounge tie sorted but reflux took months. I had the same problem of pipetting it in - spitting it out or gagging and projectile vomiting... Great. Ended up doing gaviscon in 1oz of formula before every BF. it worked so much better (despite the hassle of sterilising as much as FF!) BF up till 8 months like this!! If you are giving gaviscon then it can cause constipation so would add 2.5ml lactulose here and there to keep her regular too. It sounds like your DS is getting confused so maybe see if you can get something going that is standard every feed. Good luck

mawbroon Wed 21-Aug-13 22:20:53

Not always the case that you would have probs at the beginning.

DS1 developed reflux when he was 5yo which stopped when we had his ties revised.

citysnow Thu 22-Aug-13 08:51:30

I read your post and wanted to reply as it brought back lots of emotional memories.

I also found rhinitidine helped - massive difference after 2 days of using this but really had to convince my supportive GP to prescribe it (gaviscon didn't help us and no fun syringing it in - I mixed with water to try and give before BF). I wonder whether a medicine change will help (gaviscon keeps the milk down by making it thicker but rhinitidine neutralises the acid which causes the pain).

My baby (now one year old) had tongue tie fixed at 2 weeks but silent reflux diagnosed around 3 months of age. He was on rhinitidine until 6-7 months and thankfully fine now.

I hope things improve soon. I found it frustrating that gaviscon was always first prescription esp when it isn't right for so many babies (Esp BF ones) and did find showing a video of crying helped GP to know how much pain my boy was in (and I worried that gaviscon was making milk thicker and it was still refluxing so causing more pain).... I guess gaviscon works for some babies and it is the least chemically thing to try first....

ab00 Thu 22-Aug-13 15:11:12

Hi pumping. Sorry things are still so tough. Have you tried calling milk matters? Would be well worth it to see if they think there's something worth investigating regarding a tt & to recommend a lc in your area. The one we used was Jenny Sutherland, her website is & it gives all the details about her & her practice. With ds2 we didn't start having feeding problems for a couple of weeks & then all hell broke loose. With ds1 feeding problems were immediate & I really wish I'd known then what I know now as no one ever suggested tt & as such it went untreated. If we'd known we would definitely have got it treated. I think it really depends how it affects the tongues movement tbh as to when symptoms present.

PumpingRSI Thu 22-Aug-13 19:51:28

Hi, I spoke to a lc today and she didn't think it sounded like tt as he was feeding fine for so long and is gaining weight. Speaking to HV again today we are pretty sure he just prefers the bottle as its easier and so doesn't want boob. I'm sad but know I can't keep up this expressing in the day, its exhausting and limiting. I think as painful emotionally as it is, if I could just relieve one feed a day with formula it would keep me saner. Presumably I should still be able to BF at night as I do now? And express the couple of other feeds in the day. I'm not ready for him being off the boob, but he doesn't comfort feed ans gets frustrated with it and is sooo distracted I think he just wants to look around the whole time. And breathe...

PumpingRSI Thu 22-Aug-13 19:52:20

Oh and we're already on Omeprazole which is an equivalent of ranitidine and the reflux has abated.

JiltedJohnsJulie Fri 23-Aug-13 09:11:11

Can't understand why she would see weight gain as an indication of no tt. My dad had tt and was a right chubster. The milk matters article explains why good weight gain does not exclude tt.

Did she check Lo for tt or was it just over the phone?

JiltedJohnsJulie Fri 23-Aug-13 09:11:38

My DS not my dad. Bloody ipad.

ThisIsYourSong Fri 23-Aug-13 09:39:25

I'd stop the Gaviscon and see how it goes. Gaviscon is awful stuff and can make reflux worse as it just makes the milk thicker, 'stick' in the throat for longer and do more damage. It can take two weeks for the damage to heal and the pain to stop. When DS had Gaviscon his milk thrown up was like toothpaste.

Have you looked into intolerances such as dairy?

I've had a TT baby as well and the symptoms were from day 1.

ThisIsYourSong Fri 23-Aug-13 09:44:01

The other thing you can try is Domperidone which acts differently to Omeprazole and you can use alongside it. It tightens the muscle rather than neutralising the acid.

Also what dose are you on? The highest dose is much higher than what is generally prescribed and this can make a real difference - I think the standard is 1mg per kg but it can go up to 3mg per kg.

JiltedJohnsJulie Fri 23-Aug-13 10:05:48

If you think it may be cows milk protein intolerance, allergy uk has some useful information smile

MrsRoss26 Fri 23-Aug-13 10:12:30

It may be worth thinking about whether you have an oversupply, which may be causing some of the symptoms you describe, like the fussiness on the breast? Take a look at this

ZolaBuddleia Fri 23-Aug-13 10:18:07

DD had silent reflux and tongue tie. The thing that had the best result was Ranitidine and Carobel. Carobel is a thickening powder that you add to formula or expressed BM.

Ranitidine is great because you syringe it in, so you wouldn't need to express. Try that first. Also, I wonder whether if you end up going for both Ranitidine and Carobel it might make bottle feeding a bit more like BF, as the milk is thickened and therefore harder work to suck.

ZolaBuddleia Fri 23-Aug-13 10:19:55

Just seen that Omeprazole and Ranitidine are the same, sorry.

ThisIsYourSong Fri 23-Aug-13 10:39:35

Oversupply / fast letdown etc would have presented before 7 weeks though as the milk is most plentiful in the early weeks before supply has settled.

Unfortunately bottle or breast refusing is really common in reflux babies; they're hungry but they know pain is coming or the pain has started partway through a feed.

It really points to the reflux not being resolved for whatever reason.

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