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.

narmada - thanks for your kind support! Yes dd does make a clicking noise when she feeds. The HV (right one this time) is coming round soon so I'll make sure this gets addressed properly.

suso - as you can probably see from my previous posts and could have written your post! Hope my dd doesn't start not getting along with the gaviscon. Welcome and good luck... x

Hi ladies.Delilah has started to fuss at the begining of her bottle,she seems to want it but cant seem to settle to it,grumbling and groaning but not screaming as if in pain just fussing-is that a reflux symptom?She has ranat and dom peridone before the feed and then gaviscon in it.

Crazy thought here... Isn't it about time Channel 4 made a documentary about life with reflux? I have no desire whatsoever to appear on telly - I'm quite shy and look like hell! But the day MsScarlett described is so similar to so many of mine, and nho doubt others'. If even the healthcare professionals don't get it, how are our families, friends and Joe Public supposed to, and therefore offer meaningful support? How many of us have been made to feel inadequate, or been down the PND road when the issue is emotional and physical exhaustion?

Is it worth asking MNHQ to approach Channel 4 (or anyone else)? Of course none of us will actually have the time or energy to actually take part, or watch it
PS to MsScarlett - I had a routine check up with the nurse yesterday but when I arrived (having planned dd's feed, upright 'settling' period and subsequent screaming car journey with military precision) I was told the nurse was ill - very sorry, can we rechedule? I too burst into tears. I was mortified, as was the receptionist! Blame BF hormones

gosh the upright period is a bind isnt it?How long do people do at night can i ask.I tried to cut corners lat night as knackered but up it came thru the nose due to her cleft.
Can anyone answer the fussy feeding question,its not all the feeds but some,its as if she wants to suck but not actually drink.

DD does that a lot - roots frantically and seems desperate to latch on then either just uses me as a dummy (she won't use the real thing!) and 'snoozes' with the nipple but not actually feeding; or won't latch on but is fussy and distressed, rooting again as soon as you pop it away - especially when out and about! So IMO yes, it's reflux, but see what others think.
The holding question I can't answer - at times DD will gp straight down, to the extent that we doubt our sanity over the reflux diagnosis. At other times she seems to be 'out cold' but screams when we put her down. Some nights she only seems to snooze anyway and is never truly asleep - they're the ones we end up holding her most, if not all, of the night because she's just too uncomfortable.

Yes its hard to define reflux behaviour from normal baby silliness and im a mum of 5!!
Glad you recognise the fussiness cos it is wierd.I am ff,dd has to have special bottles for her cleft,last night we gently held a dummy in place and she loved it but she cant keep one in due to cleft causing lack of suction.
Its hard to risk putting her down too early as she aspirated milk before casusing pneumonia.
I am not too stressed at the mo but can feel it creeping up on me.

Ellnlol I suggested on here sometime last year that I want to start a campaign to get the health professionals to understand reflux better (and I am determined that one day I will get it started, if no-one beats me to it). However, a channel 4 documentary sounds like the ideal place to start and I'd definitely make time to be in it, although I haven't really had the grouchy babies with it (but with sleep apnoea in my now 12 month old and my 3 year old who will see the gastroenterologist next week as he is still on ranitidine and still has reflux!) Do request HQ to request a documentary - I'll ask if you prefer.

I mentioned a long way upthread about a mum who has ended up having her child taken away due to a non-accidental injury after asking the GP for help with reflux and being told new babies don't get it . I have felt since then, that there but for the grace of God go any of us with refluxy babies. I definitely will not be having any more as I couldn't risk another refluxer .

As for the upright period in the nights, we found with both that it needed about an hour and a half - an absolute killer and thank God they both stopped feeding in the night by 12 weeks! My DH always did one of the upright periods and I did the other. Not quite sure I'd still be sane otherwise.

At 12 months, I get the occasional mouthful back from DS2 (as opposed to the 20 per day and some projectiles I got at 9 months!!) and have a very bonny little man. I know some of you are right in the thick of it at the mo and I just wanted to say that it really does improve with time. With DS1 I was never sure of that at the time. This time round, I knew it was a question of holding out for the maturation of his guts. I hope this will encourage some of you. As for my lounge carpet, it's totally knackered from the crawling and puking phase!!

Ladies, hello. It's been a while as Ive been busy well, surrounded in self-pity as I have to go back to work in march and I am worried about leaving DS. narmada I hope that DS is showing little signs of being a bit better, even if it is just one day in twenty. Sorry I cant write all names but you guys have been busy posting I cant remember everyone...i hope those of you with tiny babies are managing to get some sleep amongst the sick and screaming. We saw the consultant monday and in clinic we were surrounded by babies who had very complex needs and made me feel fairly insignificant to be there. DS lost weight again last week and his chest is still not right so of course im still worried. Saw dietician first who reassured about DS dropping milk feeds in the day but said weight loss was ok?! Saw the consultant next and we were the last in for the morning so it was like she'd seen all of the other wee ones in clinic and we were the odd one's out as we didn't have hydrocephalus or an ng tube. She also said weight loss was not a problem. He is getting better ?! And we will be discharged ?! Not sure what else I expected really and I had my mum remind me although things still aren't right now he did used to be so much worse. I can remember it like yesterday and feel like most of my maternity leave has been a blur. To those of you who are struggling with poor babies now just try and get out of the house and go to groups etc who cares what anyone else thinks? I spent 3 months at home and now im facing the return to work I wish id done it earlier. They said DS probably not got asthma but hyper reactive airways. ell how's the weaning? Does anyone post weaning find that if LO has cold/temp they are sick or reflux worsens? Sorry this has been a mixed up post just wanted to update and say hello to the newbies :-)

Hi lady i can understand your frustration,our dd is on 3 meds and has a cleft palate and has already had an aspiration pneumonia and weight loss,she is only 3 wks.I have asked for a referal to the peads but they will probably discharge us.It seems weird to have a child on so much medication with no review or input.There are much worse things yes but this is ours.

A question.Delilah is waking in the night seemimgly for a bottle but then will not take it and cries and roots and spits and seems refluxy.It took me an hour to settle her last night,i held her up and held a dummy in her mouth gently(she cant keep one in cos of cleft)
She had had her last feed at 11 along with her ranatidine and dom peridone.Wouls this be still working?Should i save a dose and give it to her in the night?I tend to get the meds done in the day to save sleepy hassles but is that wrong?Any advice.

Hi Lady, good to hear from you again. Hope you've found some childcare for March you're comfortable with. Must admit I'm not looking forward to that bit - it seems you spend your whole mat leave in this horrible twilight zone then just as things get a bit better, you leave them for someone else to enjoy! Know what you mean about clinic - I sit with my, frankly, huge, rosy 6mo surrounded by very poorly kids, feeling so guilty. Even on MN I feel like there are people dealing with much more severe symptoms than us. Our carpet's in tact cos she a silent refluxer, but when she's literally ripping great handfuls of my hair out, banging her head and screaming, gagging on her own acid and snot, I think, no actually this is shit a bit of a challenge! Sorry, that was wallowy - we've had a bad night.
Weaning is better this time - 3rd time lucky! She seems to have foody days and days when she's just not interested, but wants to be plugged in to me every verse end. She's better at eating later in the day now. Either that or I just can't see any patterns between what/when she eats and how she sleeps. She's pooing much more regularly too, and much less effortfully - haven't had any epic 12hrs straining episodes for a week or so. So all in all, life is good (today)- if only we could get a little more sleep!! Also expecting to be discharged from paed this week too, but have changed GP to one who reportedly 'gets it', so quite happy, (whisper)I think we're on a roll .

Hi, im new second time i have tried to add this message has anyone got any good news for me i have a 10 week old baby with silent reflux and milk alergy, i dont think i can cope much longer he never sleeps and cries most of the time i cant get anything done and no one wants to look after him he is on all the meds including losac et etc etc :(

Lady I've just gone back to work in the last few weeks and feel like I didn't really get to enjoy the last year that I had off - not necessarily due to screaming here (as that was only at feeding time and the hour it took each time for 5 months), but the worry of the sleep apnoea (and his also long-term ill 2 year old brother, with gluten and dairy intolerance and anaemia) and the hassle of all the sick which meant I couldn't really go to anywhere with nice floorings!! I'd much rather have the ruined carpet that I have, than the screaming that many of you have endured.

It's such a sad situation to wish away our precious maternity leave, but I'm trying to forgive myself for it, enjoy DS2 as he is now and at least recognise that getting through the last year in one piece myself has pretty much been a small miracle!!

We have a brilliant couple in their 60s who childmind DS1 and 2 and have taken the sick/apnoea episodes in their stride and I'm thanking my lucky stars. I was terrified before I went back to work (having already done it once with DS1 without being unduly concerned) that I wouldn't cope and that something would happen to DS2. However, I'm loving being at work as it means I get a break from the stress - I can't worry about my own DS while teaching other people's! I hope this will give you some reassurance. I'm in awe of all of you who have coped with screaming, as I know it would have pushed me over the edge.

I'm afraid I can confirm that things get much worse when DS2 is ill-much more sick, even now, and through every set of teething too-what fun!

Refluxstressed the good news is that my two DS (one silent refluxer and one very definitely not silent!!) are now nearly 3 years and 12 months respectively and are doing really well. We are nearly at a point where the youngest sleeps through (which, let's face it, for us is the crux of it all, after sorting out their pain) and have two very happy boys who are energetic, smiley and total delights (I'm not at all biased!!). I'm sorry you are having a hard time now. Take one hour/day at a time and yo will find that the times passes quicker than you realise.

Hi Bethylou & others, At what point did your Dc stop vomiting? My DD is 19 months and still has reflux. It has definitely eased and now she only has a projectile vomit every week or so. (If teething, more often.) She has been seen by a paediatric dr but we were not given much help.

Basically because she is putting on weight, they were not concerned. Because she has difficulty swallowing lumps I spoke to her G.P who gave her Omeprazole. She has had it a week now and I don't see much difference in her sleeping. Not sure if I should take her off it or keep her on it for another week? Ulcers and bad stomach run on her fathers side so I don't want her to get worse!

We go for allergy testing tomorrow so not sure if that affects her reflux as well! Any advice is welcomed.

bethylou thanks for post...made me cry. I am trying so hard to enjoy him before I go back but it has been a long hard struggle. He is such a lovely, smiley boy when he is well. People always compliment me about his smile and then I get people asking if He's really ill cos he looks so happy. Grrr if only they knew?! He has lost weight again this week now only 4oz gain since beginning of december and having been on 91St centile for 4 months now under 50th...but nothing to worry about I am his mother I will ALWAYS worry about him. Saw GP today about his rash looks like Ive scalded him all over trunk and back now on head. He thinks viral and now should be getting better as rash has appeared. Still not eating very much at all. Very sour breath again and he says to call on mon or tues to update on progress and if no change we can have bloods done to check He's ok. Going back to the returning to work though, I really dont like my job so I dont think it helps. He'll be at nursery for 2 days and grandparents for 2. Think I just need to be brave :) I have found ideal job but it's an hour away from home and would have to do 5 days. Dont know what to do for the best now. refluxstressed I can say the same as others. Some days are better than others and as they get older you have more days that are better. Try and get out and about. I found that joining a baby group at our sure start centre has kept me sane. I am lucky with my family as they are very supportive but no one really understands. tras Ive got a silent refluxer that was a happy chucker until about 4 months. His sick is random now and of varying amounts. He is 8 months and I thought we'd seen the last of it but have now discovered thats is not so. I reckon it just keeps going. It is the pits :(

Lady without the amount of screaming that you have endured, it has still been the hardest year of my life so I do understand. We are programmed to worry about our children and I have proved in the last 12 months that it was a good job I did as it took a long time to make the medics listen!! I knew my stubbornness would come in handy in the long run! At 8 months you should be about to turn the corner in the next few months. I hope it comes sooner rather than later for you. Hang on in there and good luck with work!

Tras I was always told that babies were supposed to grow out of reflux by about a year (but they forgot to tell DS1, nearly 3!!) The problems run on my DH's side of the family too, so I didn't necessarily expect the boys to grow out of it easily. DS1 sees the gastroenterologist on Tuesday - I will update what we get told then, but he does have daily diahorrea and tummy ache too, as well as having spent 6 months last year being anaemic and now gluten- and dairy-free to try and help him.

My friend's DS2 had the fundoplication op that they can do after they realised how severe his reflux still was at 20 months and started to cause internal bleeding. I say this not to worry you, but to show a) how rare it is that they do the op on typically developing children and b) to keep an eye out for any blood in the vomit as this was why he was operated on.

The other thing to ask for is a referral to your local NHS speech and language therapy specialising in feeding/sucking and swallowing as they can help you with aversion to food, which may be why she gags on lumps still. I accessed it through the GP and HV (but only knew about it through working with pupils with special needs!) Finger feeding and, separately, sensory play with paint/jelly/shaving foam etc.. are supposed to help - I'm sure you've probably looked into it all, but just saying in case you haven't been in that direction.

As for stopping being sick? DS1 was a silent refluxer but still definitely has reflux now - lies in bed and tells me he's got milk in his mouth an hour after eating a yoghurt and has a lot of sicky burps, most of which he contains and deals with. DS2 is still puking a few times a day when ill/teething (i.e. regularly again at the mo!) but has days in between without any.

Oh I'm so glad this thread is here!

DD is almost 7 weeks and diagnosed with reflux almost 2 weeks ago. White tongue, screaming in any position other than upright, very farty, obviously in pain but not always from gas, acid breath, curdy sick, acid spit up, dribble. Usually at around 11 and again at 4 during the day. Reading others posts has been like reading a checklist.

Were using mylanta at the moment but the dr said to only use it for about 4 days. 2 weeks later we still need it.

Never bought a sling or Bouncer. Going to shops tomorrow to look.

MsScarlett sorry to see you from the jan2011 pn thread :(

Thanks Bethylou, must get the paints out tomorrow for a bit of fun. The consultant at the allergy clinic said that if she still has reflux (i.e puking) by two years they would recommend an xray to see if she has a Hitus hernia. I still think that even if the actual vomiting stops, she will prob still have a silent reflux for a while.

The allergy specialist recommended we come of Lactose free milk and challenge her with full fat milk. That was on Thurs and so far so good. Apart from a tiny deterioration in eczema, there hasnt been any diarheoa etc. Hopefully that will continue! would love to hear what the gastroenterologist recommends.

Ps the only way I seem able to get the omeprazole into my DD is to mix it in her wheetabix. Is this ok? It still does not seem to have made a great deal of difference to her at night time. Hard to tell if its really helping at all.

As far as I know it doesn't make a difference. We moved onto lanzoprazole which has suited my DS2 much better and he has it on his tongue as a dissolvable tablet because it tastes of strawberry.

With DS1 we haven't even made enough progress with lactofree milk to try a challenge. Will spend tomorrow evening deciding what we want to ask the specialist on Tuesday and what we hope to get from the appointment.

Hi all!

Just a quick update. My HV recommended colief and dd has responded wonderfully to it! She actually slept for 5 hours last night!

Not sure if that means I am a complete fraud and actually she in fact just has colic, or whether her reflux is aggravated by a lactose intolerance (basically colief is lactase enzyme so it breaks down lactose in my bm)?

Anyway I'm sure most of you will probably have already tried it, but in case any of you haven't, then do and see if it will help. It is expensive (£10.99 from boots) but hv says gp should prescribe it now we have tried it and know it works.

She has only had one projectile puke since we've used it, and she goes straight down after a feed with no screaming most of the time. She even doesn't mind having her nappy changed now! Poos are still green and have darkened to a blacky green now so not sure what that's all about .

Hi to beijing! I too am sorry to find you here

Quick question, will lactose from my diet pass to dd in bm? Or will there always be the same amount of lactose in my bm whether I consume it or not? Is it cow's milk protein, rather than the lactose (the sugar) that normally causes a reaction in the lo if the mother eats dairy? I'm thinking of cutting it out anyway as in the past I have found that too much cows milk triggers my migraines so we may both benefit...

MsS yes lactose will pass over - you might be advised by health professionals to go lactose free, which I'm doing for DH and DS1 now anyway as they have both become lactose intolerant in the last year. Colief definitely helped DS2, who wasn't officially lactose-intolerant, and definitely didn't have colic symptoms, just reflux. Glad it's helping!

Thanks bethylou

Yeah, pretty sure dd doesn't have colic. I WISH she only had symptoms for a few hours in the evening! DD's symptoms happen day and night and she has every symptom described on this thread...

Also, can anyone advise on tongue tie? It was spotted by hv and I took dd to see gp about it. He stuck his finger in her mouth and he said that because she has a strong suck it won't be affecting her feeding and that it therefore shouldn't be corrected. Is this right? My understanding was that if the lo has no problems feeding then it shouldn't be corrected, but clearly my dd DOES have problems feeding, obviously this may be due to reflux and nothing to do with tongue-tie, but if there is ANY chance that it is causing problems e.g. causing her to swallow air etc. then I would be inclined to get it done as it may make things better for her and it is a relatively minor procedure...

Hi MsScarlett in answer to your questions:

Tongue tie - I would get it done. It can cause speech problems in later life, might be fine, might not, but it is a very quick and simple procedure. Apparently tongue tie can sometimes exacerbate reflux by encouraging air-swallowing like you say. Also, my thinking is these poor little babies with reflux don't need any other feeding impediments, do they? Our GP was also dismissive of the procedure but we went and had it done anyway. It cost £80 - there is usually a weekly clinic somwhere local.

Re lactose - true lactose intolerance in babies is very very rare. What you eat will not affect the amount of lactose in your breastmilk. It's a sugar generated in your body. Most babies with sensitivities are sensitive to the cow's milk protein, which can pass into breastmilk.

What might be an issue is oversupply: if your DD is getting lots of watery, lactose-rich foremilk then that could be giving her the symptoms of reflux, or exacerbating physical reflux owing to a weak valve in the stomach. The kellymom website has information on identifying oversupply and how to remedy it..

To tras - I think omeprazole and lansoprazole need to be given in a fasting state - e.g., at least 30 minutes before food. At least that's what I understood and what I've been doing with DS.

Thanks Narmada.

I did ask the HV about foremilk/hindmilk imbalance, but she said if lo was getting too much foremilk she wouldn't be gaining weight like she is... Which tbh doesn't make much sense to me. HV came round today and I was glad because she saw dd at her worst, when she weighed her she starting screaming, choking and went purple and you could smell the acid on her breath. She is contacting the gp to make sure we can get colief on prescription and she is contacting a breastfeeding expert at the hospital on our behalf as she is also of the opinion that we should try correcting the tongue-tie.

Anyway, sorry to blabber on as per, hope you all are ok! x