Support thread for all parents with reflux babies...

[PosieParker]

Just thought a pooling of ideas would be useful. Any ideas about meds, symptoms, coping strategies, things to make a baby quiet!!

Symptoms:

Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Little sleep
Constant crying/screaming

(please add)

Meds:

My memory is a little rose on this and I can't remember

Coping

SWING,
pushchair walks
accepting help
Sometimes putting your baby somewhere you can't hear them whilst you have a large gin cup of tea.

we ended up being admitted again when we went in on fri as they weren't happy that his feeding had gone down again, especially when he only had 10oz between 9pm and 3pm. Thankfully after this he started eating well again and his stats were ok after increasing the dosage. We are back home today but we have to go back in on Monday for the final increase in his medication; apparently we are on the urgent regime as it is having an effect on his feeding, so we might see shrinkage a little earlier, though it will obviously still be some time before it's shrunk enough.

I mentioned the red and itchy eyes and wind to the day care doc and he immediately asked about allergies but due to moving around nothing got sorted about that. We received a free weaning guide by cow and gate yesterday in the post and I was surprised to find a mention of cows milk allergy/intolerance in it's section on food allergies -it suggests main symptoms include itchy eyes and sneezing, and wind is under intolerance. He does seem to have a fair few of the symptoms you mentioned daisylulu (thanks for those btw) so I will definitely try and get some formula prescribed to try. My half brother had cows milk intolerance as a baby and my mum and I have eczema and ds is getting dry flaky skin on his upper arms, which is the same place and type as mine...

we got to see a speech therapist who believes that the problem with feeding and the birthmark is that sucking on the teats cause friction which causes pain and discomfort. He's obviously learnt this which is why he either eats less at a time or less often, or both. The hospital tried him on orthopaedic teats today and he's gone up to 7oz a time (woo!) which obviously due to their softness causing less irritation. We are thinking of weaning him a little early as this may also help as he'll start having less milk from the bottle and getting what he needs from the food.

milamum I had trouble with ds and not knowing when to sleep or feed and a friend recommended Gina Ford's a contented little baby which details the routines she has found work for most baby. I put him into the one for his age group at 5 weeks and he took to it immediately. After a week or two we adapted it to what works best for him but I did find the information she gave about sleep in general very useful and I'm going to get it out again to look at weaning. He is 16 weeks now and generally he goes down for his naps after about 1 1/2-2 hours, this sometimes differs slightly in the evening. daisylulu routine sounds pretty much exactly the same as Gina Fords in regards to feeding. Thankfully most of ds's feeding troubles do seem to be related to his birthmark and as he is eating 6/7ozs a time he tends to go four hours between feeds. Yesterday in the hospital we were feeding him every three hours to try and get enough down him, even if he wasn't asking for it. He did seem to take when we gave him the bottle, occasionally doing a split feed again (I time from the time he first fed, but give leeway if he really doesn't seem hungry). It might be worth trying a little and often and get her into that pattern and it might help with reflux as there's less in the stomach to cause problems?

Hi daisylulu and hellitops, thanks for much for the tips re routines. I need to try and get her into one, I've just been really nervous about doing it as she takes so little at a time, I worry that if I stretch it, her daily intake will fall. I'll probably try a 3 hour one first as she's so far been mostly eating every 2 - 2.5 hours, I don't think she'll eat large enough amounts for a 4 hour one. I also keep track of all dd's feedings among other things like meds, naps, nappies and night wakings so will try to structure her routine as close to her natural rhythm as possible to make it easier for her as I'm sure we'll need some flexibility there anyway due to her feeding problems.

hellitops, that's great news that your ds's birthmark is being sorted out and hopefully his feeding will go back to normal in no time.

Well I think we have a diagnosis through experience.

I cut dairy out of my diet a few weeks ago (DD is ebf) and think there have been couple of occasions where something slipped through but wasnt sure. Anyway, after a few really good days after now being on ranitidine and domperidone, yesterday had a cookie assured by person making it that it was dairy free - I was a bit suspicious but the thought I could have something nice kind of overrode it. Cue a night of screaming last night...

So back to dairy free and I think I might have to ask the gp to prescribe some formula in case we have any of these accidents again. I do love my chocolate though arghhh!

bubandbump really pleased you have an answer - no need to swear off chocolate, most varieties of 70% cocoa chocolate don't have any milk in them, hurray!

hellitops, sorry about the back-and-forth to hospital but brilliant something is finally being done. Amen! I would keep on at them to give you a trial of the formula though - the longer it's left if it is a milk allergy, the more difficult it will be to get your LO to accept a non-standard formula.

thanks milamum and narmada :) We've had a much better day today. Went down for an 1 1/2 nap this morning in his cot with apparently little trouble (DP was nicely letting me have a lie-in for the first time in weeks) and he went to bed tonight with little trouble as well. He's had 2 7oz and 2 6oz feeds and as he drained both 7oz feeds I'm thinking of making first and last feed 8oz and see how he does.

as for the CMPI I am thinking of refusing to leave the hospital until they give me a prescription -surely they can give me a prescription even if they don't stock it? His symptoms are worse, which is probably due to his higher intake, and the medication for his birthmark might not be helping either as it can have effects on gastro processes. His wind is terrible. Most of the time it is fine but he has little episodes of the painful wind that cause him to cry and scream in pain. You can't get him to settle until it stops. We had a bit the other night when he woke himself twice with it and today twice again, once at 4:45am and again at 3:30pm, both times today lasting 45mins or so poor baby :( His red and itchy eyes are also worse. I noticed that they were bright red straight after his 7oz feed tonight (the itchiness tends to be a little delayed) and stayed that way until he fell asleep, and probably are still red if I went and looked now. I'm sure it's the feeding as his eyes are normal when he wakes up after his night's sleep when all the milk has left his feeding.

I think if they were to change his milk now, he would have little problem, as this week he's been switching between ready-made milk at the hospital and normal cow and gate and comfort cow and gate at home, with no trouble. I will let you know what happens tomorrow.

Hope everyone has a good night

Do it, hellitops, honestly, everything is screaming some sort of allergy. My son had the stinky wind - it was horrendous, could clear a room. That, and the stomach cramps stopped entirely on hydrolysed. I would imagine they will stock prescription baby milks at the hospital, or if not, they can order it in same (week)day.

It's really great he's taking bigger feeds, thank goodness you got some action on the birthmark.

narmada tbh we are wondering why we carried on listening to the HVs for so long and didn't get anything done sooner. The birthmark appears sore again tonight :( but as I said he took his 7oz no problems (that might have caused the soreness).

We have noticed however that since he is getting his 27/28oz from 4 bottles due to bigger feeds, he is not asking for any more. He seems happy on this amount -apart from the wind and discomfort -so I don't think I want to try and force any more down him.

Does anyone have any thoughts on early weaning? He seems really keen now -trying to sit up, watching us while we eat, increased drooling and putting his fists and toys in his mouth all the time; these are signs of getting ready -and he even tried to feed himself with the bottle today (so cute).

I'm going to ask the doctor tomorrow about trying some baby rice so he can get used to a spoon and different textures. the speech and language therapist thought it was a good idea as it would reduce friction and I know some babies with severe reflux can be recommended to wean early. He's not eating masses, which is another reason some are weaned early, but then again although he's eating more with these teats, he might not be eating as much as he can as friction will still be an issue

hi hellitops, I started weaning my dd when she turned 17 weeks on the recommendation of her paed but we are taking it super slow and have so far have only given her baby rice and some cereal with her milk (ebf) making it quite thin consistency. She does like it but when we started she already had very good head control, quite good hand to mouth co-ordination, was making chewing motions especially when watching us eat quite intently, was sitting well when supported. She's now 20 weeks and we've just only recently given her a taste of banana and avocado, but it was literally less than at tsp just to let her taste the flavor.

They do say that once baby starts weaning, they drop their milk intake and as dd's quite difficult to get to drink enough, that's another reason I'm taking it so slow with her weaning. Also, the increased risk of developing allergies is a consideration but tbh, she takes her milk better with the porridge so that's a way for me to get some more into her. I'm not sure how old your ds is (14 weeks?), but I'd definitely hold off until he's 17 weeks but obviously it's up to you what you think is best to do.

Well, had a visit with a Speech and Language Therapist this morning to assess dd's swallowing and feeding to see if there is an issue with her aspirating during feeds. SLT said that although it was impossible to say 100% without tests, in her opinion dd doesn't aspirate when feeding and seems to have a decent enough suck-swallow-breathe co-ordination. She said that she may be aspirating small amounts into her airways but is seems to be able to effectively clear that out when she coughs. So she couldn't really say why dd was refusing feeds, she thought it's a combination of learned behavior and her associating the pain with eating, dd taking in too much air when feeding and getting bloated very quickly and possibly starting to reflux 2-3 minutes into a feed and so stopping the feed as she gets uncomfortable from that. SLT said I'm doing all the right things and she can't really suggest anything else in addition apart from stopping the sleep feeding or limiting it as much as possible but obviously if dd's milk intake drops, I can carry on! :(

She suggested I put a limit on how long I'm going to sleep feed (i.e. another month or two) and then stop cold turkey if necessary and hopefully by that time dd'll be fully weaned so I can sneak the milk / dairy in with her food. She is going to monitor dd for the next couple of months and if no improvement, may recommend tests to find out exactly what's going on inside but at the moment she thinks it's important to make sure reflux is well controlled by the meds so that dd's not in pain otherwise it'll make her feeding problems much worse.

So we are still exactly where we were, but at least I feel a bit reassured that dd's most probably not aspirating on her milk (although I don't know if "probably" is good enough!).

We have our next Paed appointment on 2 Sept so will review with him then.

Bubandbump can you tell me what it is you eat now in replacement of dairy? And also are you still using medication too?
Update for me is I took my girl to docs, they gave me gaviscon for her. It seemed to work but I cant seem to express alot and she doesnt like water so had to mix it with formula and then breast after. She was even pooing every day but after a week on it her poo's are thicker and she seems to struggle getting them out. Her crying has started again and now not sure if its because of the reflux or her trying to poo. Suppose to be going back to docs today but cant get through to them. I was thinking of changing my diet to see it helps, cutting out fruit juice, acidy fruits etc. Does anyone have advice?
I am not the best with food at it is so thinking of a healthy diet that will help my girl is hard, sad but true lol.

Hope you all are doing well and things are improving

Hi all,

I wonder if anyone here may be able to help with some advice or share their experience of their LO taking Lansoprazole and any side effects it may have caused them.

As some of you may know, my 20 week old DD has silent reflux. She was on a max dose of Omeprazole for 2 months (18mg taken twice a day) but was switched to Lansoprazole 3 weeks ago because although Omeprazole controlled well her reflux symptoms, she was still refusing to feed where she'd either eat for 2-3 minutes and then pull off and won't continue or refuse feeding altogether to the point where I have to sleep feed her (she's bf). We thought switching the medication may help and so are trialling Lansoprazole, she's currently on 7.5mg taken once a day (am) 30 mins before a feed. The dose was increased today to 10mg once a day but we've not yet given her the increased dose.

Since being on Lansoprazole she started having screaming episodes every evening after already going down for the night. They start at the same time between 9pm and 9.30pm and she won't calm down or be settled for a hour or two. It looks like she's screaming in pain (possibly stomach cramps but difficult to say). Also, her night sleep has become very disturbed and she started waking up pretty much every hour or even more often and sometimes won't go back to sleep for 1-2 hours! Needless to say I'm exhausted. She used to sleep quite well with only a couple of wakings for a breastfeed (around 2am and 5am). She is absolutely fine in the day although her feeding is still bad and I sleep feed her most of the time.

I am wondering if the screaming in the evenings and night sleep disturbance are side effects of Lansoprazole or if it actually wears off by this time as we give it around 7am and so it's reflux causing the screaming ? It doesn't look like reflux though, that's why I'm thinking it's possibly the medication but it's strange it's at the same time every day.

If it's Lansoprazole causing all this, we will go back to Omeprazole but I really don't want to keep switching her meds unnecessarily. Has anyone else noticed any side effects in their baby taking it?

Many thanks

Hi everyone, may I join this thread? Have been following it for a while -its been a huge source of comfort to me so thank you everyone for posting!

DD will be four months tomorrow (where does the time go! :0) - and has had reflux since birth although only diagnosed fairly recently. We were given the colic c* by GP's too. She's been on omeprazole for 6 weeks now (upped to 10mg per day 3 weeks ago) and also diagnosed as CMPI and lactose intolerant by her paed consultant and has been on nutramigen for about 2 months. (previously BF).

Nutramigen definently stopped the 24 hour screaming and writhing in pain constantly and Omep seems to be helping to take away the pain of reflux. DD still refluxes (has always been a silent refluxer) and has always terrible tummy craps and wind. These are a little better on nutramigen but she still wakes up screaming inconsolably from naps and night sleep....and the minute nutramigen hits her stomach -its gurgling and she's writhing around/kicking legs.

Daisy - been following your posts re neocate vs nutramigen. Phoned the paed consultant this morning after getting nowhere with GP..and asked if I could trial her on neocate for a few weeks to see if digestive issues are resolved. Got a firm telling off (thank god it was over the phone - that is one scary lady!) - and told in no uncertain terms not to change her milk, nutramigen best milk for CMPI/reflux babies and neocate only used in pre-term babies...etc etc..

She wants us to continue with the Nutramigen/omeprazole at 10mg for another month and will then give us more meds (!!!) for DD if its not working! Think she mentioned domperidine and carobel....

DD takes 6 ounces every 3 hours and is a big baby so everyone keeps telling me she is fine! Has no feeding aversions yet..... am I worrying too much and should I continue with current formula/meds?

would appreciate any advice anyone can give - am very grateful that DD is much better than she was in her first two months of life - that was a truly horrific period. (shudder).

should also add DD has v stinky dirty nappies (green and runny) - around 4 a day!

In short , your Paed is talking nonsense, nemogirl. Neocate is suitable for full-term infants, it's not a high-calorie milk, it's an elemental amino-acid based formula completely free from milk and is suitable for those babies that can't tolerate extensively hydrolysed formulas like nutramigen. The reason he or she doesn't want to prescribe it either because they have poor understanding of cow's milk protein allergy or possibly because it's very very expensive and only comes in tiny tins. However, if your DD does turn out to need neocate, then my advice is to get moving fast because it tastes horrible (even worse than nutramigen) and older babies mightn't accept it.

BTW, re. the lactose intolerance - does your doc think your baby has congenital lactase deficiency or is the lactose intolerance secondary to the cow's milk protein problem (it can sometimes cause it by irritating the colon and impeding the body's ability to produce lactase, I think). I am asking because congenital lactase deficiency is really quite a rare thing.

Nemogirl, if you don't mind me asking, where is your paed based and is she private? It's jus that she sounds very much like one we had (who has thankfully now left the NHS) who told us all manner of c**p about our DS!

milamum sorry, been busy with the two kids, they are both being horrors today, didn't want to read and run.

Lansoprazole...I can't say that we had side effects like you describe. I think it's definitely possible that it's wearing off as 9 pm is a full 14 hours after you dosed her. What does your paed think about split dosing (once in the evening, once in the morning)?

The sleep thing may or may not be related to medication or reflux....hate to say it, but it's incredibly common for sleep to go down the toilet at around 4 months or so (the famed 4-month sleep regression). Is your baby always sucking to sleep? If so, she is just around the age where she's starting to make associations between things - she may be associating sucking with falling to sleep and when she wakes up and the nipple's gone....waaaah. During the night, is she back to sleep quickly once you feed her?

If you think there might be an element of that, then I really recommend a book called the No Cry Sleep Solution by Elisabeth Pantley - it's really gentle and suitable for breastfeeding mums and babies as well as FF.

OK, I have my own query today for those with LOs who have weaned off meds.

DP and I thought DS had largely outgrown the reflux so decided to slowly wean him off Lansoprazole. All's been generally fine and he certainly isn't having the problems with food refusal like in the bad old days, although he isn't in quite as good spirits as he was previously.

And... his sleep has gone completely to pot; plus he absolutely hates lying on his back. Cries every time laid on changing mat or in cot etc. Also I have noticed that on a couple of occasions I've put his spoon into my mouth to steal his leftovers and it has tasted horrbily of sick, even though he is now rarely sick (like, maybe only 2-3 times a day, nothing compared to before). I think he is regurgitating while he eats. Ugh.

So..... I am wondering whether he should be back on the meds or whehter the sleep thing is developmental. Our next pedi appointment not until end Sep and not sure what to do until then...

Hi narmada, we won't see the Paed until 2 Sept but he said at the last appointment that we have a range of 6mg to 10mg a day to play with so the GP gave us a prescription for 3/4 of a tablet (11mg per day) yesterday so I'm going to try the increased dose and split it am and pm (7.5mg am and 3.5mg pm) and see how that goes. But I'm very suspicious that it's at the same time every day so am thinking it's the meds potentially wearing off as don't see why the side effects will only be happening in the evening...If need be I'll be willing to trial a max dose of 15mg for a couple of days before seeing the Paed in Sept as TBH he hasn't got a clue anyway!

narmada thanks for the quick response. I agree - paed talking nonsense, tried to tell her that I was fairly certain neocate was suitable for a 4 month old and that nutramigen still had milk protein in it...but got a snappy response along the lines of 'are you questioning my ability to diagnose your child..'.... Er yes. . And I did offer to pay for the neocate which I must say infuriated her even more... oh dear this relationship isnt really going to work is it? and we've only met once..

Paed is based in SW scotland and is NHS so if that sounds familiar - I'll PM you details.

DD was diagnosed with the temp lactose intolerance by GP at 6 weeks - based on the fact that she was absolutely awful from day 1 (screaming, arched back, digestive issues etc) on breastmilk but in hindsight - I'm fairly certain she was probably CMPI from the start. I never did cut out dairy from my diet while BF - I now wish someone had told me to do that instead of switching to formula.

DD still wheezing and congested like she has been from start, even on 10mg of omeprazole - so I'm beginning to think its maybe not as much reflux related as it is allergy related. Which is why a simple 2 week trial of neocate would be so beneficial!

Next step is to try and speak to dietician paed has referred me to (she doesnt want to see us back until Oct and will discuss increasing meds then - no chance!). Hopefully dietician will be better informed and can advise us then...

narmada - forgot to say thank you about the book suggestion. I have got it and used it when dd was a few weeks old before reflux problems kicked in properly and it worked really well, she learned to settle herself for night sleep after me trying the method for one night which was great. Unfortunately as her feeding issues have developed and I had to start sleep feeding her, she now is usually nursed to sleep as that's my time to feed her. It's the same when she wakes up during the night, I'll nurse her and she goes back to sleep while nursing so I'm afraid you are right and she's starting to make these associations but until I sort out her reflux/feeding issues, we are stuck with them. :(

i would like to say having read this thread i am really dissappointed at the reactions people get from GPs and paeds and their lack of knowledge on the subject of silent reflux.
I am a GP myself, but also happen to have had a baby with silent reflux. i put up with it for 4 months of hell and sleep deprivation before realising the diagnosis. mainly due to my lack of knowledge.
i now have made it a mission to try to educate all our doctors and health visitors on the subject.
one day i think it will be a more well known subject along with milk proten intolerance/allergy. in the meantime thank god for mumsnet.

NemoGirl - Neocate is not a prescription item so you can get it yourself in any pharmacy and do a 2 week trial and then if there is an improvement, you can really push the GP for a prescription so that you then get it for free. I think the OTC cost is around £30 depending on the pharmacy. I got a can to trial with my dd but she completely refused it! :(

I know it may just be an off-the-shelf solution, but we tried SMA Staydown with our then 10 month old DS and it worked wonders for his reflux. I'd highly recommend it. It's probably been the best thing we've tried in the last 12 months of discovering parenthood!

hello everyone, sorry things haven't been going too well :(

we got admitted again on monday and finally got home this evening. Ds's ulceration on his birthmark turned into a scab which he got rid of last night (spent most of the night crying and not settling -thank goodness for great nurses). The pain was less today and he got most of his needed feed through the bottles. I am now ng tube trained, so I have been topping him up. He has 200ml/7oz 4 times a day.

milamum I've been working on ds' sleep associations as I don't want him to get too used to having to be rocked, or at least needing to be rocked for long periods, and especially having to be rocked by me all the time. (would you recommend this book?). During the day I take him into his bedroom and play the lullabies through the ipod and he tends to go off in my arms without fuss, and I am hoping to start helping him to learn self-settling -he's done it a few times, sometimes in his swing or on his playmat. At night though recently I have him in my arms, with his dummy in and his toy in his hand and he puts himself off while looking at me (which is quite sweet)

As for weaning, he is 17 weeks on Friday. The dietician said to try and wean from 20weeks so we're just thinking of trying him with baby rice and once he gets used to that, baby rice with purée and then move on to porridge for breakfast and start introducing puree at lunch and tea etc and slowly build up the amounts. Thanks to the ng tube the possibility of him reducing his milk feeds until we can get enough solids in isn't an issue for us. By the time he's ready to make up the few ozs a feed I'm topping him with through the tube, through the solids, the tube should be out and his birthmark starting to shrink. But we'll see.

He's got great head control, really good hand-eye co-ordination and putting things in his mouth, and he sits for quite long periods next to me on the sofa (with the big cushions supporting his back and I put him at a slight angle so he doesn't tip forward).

Hi all

Thought I'd post a quick update. Sorry not to namecheck properly.

GP prescribed neocate on Monday- I actually went and bought a tin on Sunday so today has been her 4th day on it. Am pleased to say she has been taking it fine and bowel movements are back to normal (albeit forest green though apparently that's normal on neocate).

Unfortunately tho J had 2nd jabs today and we've had a day from hell. Can vaccinations make reflux worse?

We had really pained screams tonight. I gave her some calpol and J projectile vomited everywhere am hoping it's a reaction to calpol (first time she's had it) rather than formula and meds not working. Interestingly having done some research I've realised that calpol has some E numbers in it that can cause an allergic reaction. And these are the same E numbers in woodwards gripe water which also used to make J instantly projectile vomit in the early days....

I should add that the tongue-thrust reflex that MN says is the sign of readiness to most look out for, is pretty much gone, from what I can tell.

We feed him his medicine by syringe and he just swallows it, even if only the tip is in his mouth as it was just now when giving him his last dose while he sleeps. None was thrust out at all (I understand this may not be exactly the same with food, but I take it as a good sign)

Oh yeah and (narmada you will be pleased to hear this) I saw the deitician and he has been put under their care for possible CMPI and we are on aptimil pepti. I'm hoping that this will be enough as his allergy doesn't seem quite as severe as many of your LO's, though that might be, I suppose, as he doesn't seem to get much reflux symptoms alongside it now we have his feeding amounts sorted