All new deluxe reflux support thread

(323 Posts)
buttonmoon78 Fri 23-Sep-11 08:04:53

Welcome one and all!

highlandbird Fri 23-Sep-11 10:44:13

oh, hello, is it alright if I join this thread? My LO is 6 months old and has now been on ranitidine for the past few days...hard to see if its making a difference yet as he is sooooo constipated that he's constantly crying with that now. Really thought his SR would have improved by now but we're still having 3 hour screaming marathons every evening. He's fine in the daytime really jolly and smiley, between 8 and 11pm is his really bad time. Would be really nice to hear I'm not alone in this (if that doesn't sound too selfish!) and to know how anyone else's LO that is on ranitidine is getting on, how long it takes to work etc?
He's also on lactulose for the constipation, gaviscon I think is what caused it in the first place, poor mite, feels like I'm stuffing him full of bloody prescription drugs but just at a complete loss as to what to do next sad
Also does anyone else feel that their HV doesn't take them seriously or is it just me thats been unlucky?!

Bubandbump Fri 23-Sep-11 10:46:31

Morning all

<peers at squeaky new thread whilst stettling down comfortably for the duration, would take out knitting but I don't do it and would pour myself a cup of tea but can't as dairy free...>

BBB welcome from AIBU. I second everything re Dr Lindley - our DD is under him <wonders if mumsnet is taking commission from him> and he is lovely but most importantly really listens and fills you with confidence (as opposed to my GPs who asked what medication I would like..). DD is cmpi as well as soy, wheat and eggs.

Just an update, we are on day 3 of sleep at night- the injections knocked her and started the reflux again even though exclusion diet was working. It took 6 days after her injections whereas it normally takes 9 days after a slippage in my diet.

We are going to start her on formula next week now (fingers, toes and everything crossed) she seems to be stable again (she is ebf and a bottle refusenik unless it has gaviscon inconfused. The GP has given us nutramigen instead of the neocate that Dr Lindley recommended. I don't know whether to try her with this as she is super super sensitive to even a trace of dairy and don't want to go through 9 days of hell instead of going to GP and demanding neocate.

Does anyone have any thoughts on nutramigen v neocate?

Bubandbump Fri 23-Sep-11 10:53:44

Highlandbird welcome to this highly undesirable club. My DD is on ranitidine and it does take a week to start kicking in. It doesn't stop the sickness, just how much it hurts. Also it seems that the minimal amount the GPs feel comfortable prescribing don't often have any effect. If so, you need to get a referral to a paed.

My HV kept insisting it was colic and colief should work (yeah that's for really rare lactose intolerance, so she was clearly just making it up). I just ignored her and turned up at the GPs every week with a screaming baby. They got very fed up of me very quickly..and I got my referral.

MotherPanda Fri 23-Sep-11 10:59:19

Hello, Everyone -I'm going to jump aboard.

Highlandbird - I know what you mean about HVs - I think its because a lot of people say their baby has reflux when actually, their babies are just a little bit sick sometimes.

I figured out my baby had reflux around 4 weeks - we are now 8 weeks and things are so much better! She was constantly bubbling at the mouth, sick at least 5 times between feeds (what a PVer!), I couldn't put her on her back ever and she was just always screaming in pain. Weight was gaining very slowly - which was my main worry.

Thankfully for us a mix of infacol and gaviscon has made all the difference - she is a bit constipated now, but it doesn't seem to bother her as much as the acid pains did. Have been doing lots of baby massage to help things move along. It's funny because my DD is breastfed - so everyone I ask for help with just tells me that breastfed babies can't get constipated...hmm

My magic remedies: Infacol, before every feed, Gaviscon, I wish I'd had a bouncy chair from the start - I can finally use the toilet in peace! I tilted her moses basket with books at the head, Using the sling around the house. Make sure I sit DD up for 30mins after a feed - sleeping at night in the car seat if it comes to it.

I'm curious as to weather my dd is actually milk intolerant... Lactose intollerance seems to run in my family - and we have some awful smelling wind and poos (somebody told me bf poo smells like freshly baked bread - dds smells like dog poo or worse). Has anybody else noticed this? I've switched over to goats milk to see if it helps but I really don't want to give up cheese sad

Sorry for the long post!

Bubandbump Fri 23-Sep-11 11:09:52

Motherpanda welcome too. Just a quick one, yes DD's poos were runny and smelly, now 'normal' on exclusion diet. Goats milk unfortunately normally won't help as the proteins are too similar to cows milk. Some cmpi babies also react to soya for the same reason. My DD reacts to any trace of dairy and similar proteins, no matter how small.

And to answer BBB on the previous thread, excluding DD's intolerant foods turned our lives around. From a baby who would only sleep in our arms at night otherwise she would arch her back and bang her head against the cot whilst clawing at her ears, to a sleepy contented baby who doesn't really have any reflux. I am on a pretty restricted diet but it's more than worth it to see all of her symptoms disappear. There are so many alternatives to dairy and soya that it's not even that hard.

MotherPanda Fri 23-Sep-11 12:03:28

Thanks Bubandbump. oh dear - looks like I need to start excluding things too then... I guess things like rice milk should be ok? Think I'll have to get in touch with my vegan sister and ask for some guidance. So many things have soya or dairy in. hopefully dd's fine with eggs...

buttonmoon78 Fri 23-Sep-11 12:50:36

Well, we still seem to be having a good day. I don't know whether it's the new bottles or the new formula. I don't really care - the formula is no more expensive really and if it means another few £s to complete the set of 6 bottles that's a small price to pay for such an improvement.

Ironically, I met a friend for coffee this morning (first time out socialising because of reflux) and she was going 'oh, he's in such pain isn't he? what a lot of sick! you must be at the end of your tether...' etc etc. I didn't dare tell her that this was a good day! It has put into perspective what a 'normal' baby should be like and made me realise that yes, we do still need to see the paed!

daisylulu Fri 23-Sep-11 12:50:37

bupandbump sorry to make quick but need to attend to J- however just wanted to say I would strongly push for neocate. Ime it's as palatable as nutramigen but more importantly less likely to get reaction. J still had funny runny poos on nutramigen - well actually she was ok for first two weeks then proteins built back up. Lindley also said neocate has healing qualities which nutramigen does not have. He said gps are told not to prescribe it as it's £37 a tin vs £14 for nutramigen. But he also said that as he was recommending it in his letter to the gp then they should prescribe it.

Hi newbies and welcome to our horrible but very supportive club. Will be back later to catch up with posts properly.

highlandbird Fri 23-Sep-11 13:31:56

Ah, it would appear we're not the only ones suffering then, although I think our problem isn't as bad as it is for some of you.....we don't get all the projectile vomits its silent reflux in this house, and he's generally really jolly and smiley in the day, his bad time where he wakes up and screams and screams is about 8pm to 11pm, really hoped he would have grown out of it by now. We're doing BLW here and I thought the introduction of solids would have helped a bit but it hasn't, we've been doing the rounds of colief, gaviscon etc since he was about 4 weeks old but nothing seems to work, so fingers crossed for the ranitidine now, its just I won't know if it works until the constipation has eased....just bf him today no solids as don't want to bung him up any more sad
Not a fun club you're right but always good to share advice smile keep telling myself it won't last forever (let the 'it will pass at 12 weeks' mantra slip a loooong time ago!)
Thanks.

Bubandbump Fri 23-Sep-11 13:39:19

Phnyes I did the 12 week thing - I am now on the 6 month thing and burrowing my head firmly in the sand..

Daisylulu we are back to see Dr Lindley on Tues and he did say in his letter last time that she should be prescribed neocate if on formula. We haven't tried her on any yet so wasn't too fussed when the GP gave us nutramigen but now we are planning to introduce one bottle a day, I want the best possible outcome especially as she needs to get used to the taste. I'll go back to the GP and tell them she reacted to nutramigen - just pre-emptingnwhat is likely to happen!

Bubandbump Fri 23-Sep-11 13:56:53

Motherpanda yes rice milk is fine. I honestly didn't find non dairy too bad, it's the wheat and eggs that are a bit harder for me!

M&S do some non dairy and non soy bread, there is rice milk or oatly which is creamier and has cream alternatives. Unfortunately I think most of the cheeses aren't supposed to be that nice but there is normally a free from section in the supermarket. Double check chicken breasts and ham - it's amazing what cr*p they add to straight forward food..

camdancer Fri 23-Sep-11 14:06:15

I'm in. DD2 is 16 weeks and on ranitidine. Luckily after DD1 was also on ranitidine but max dose, my GP just prescribed the maximum dose immediately. She is ebf so I'm trying to find out what in my diet affects her. So far it's gluten and dairy. Dairy was this week and almost immediately she got spotty and her poos were just nasty. It is so hard trying to work out what is doing the harm as there are so many other things it could be. Next week I'm going to try corn and if that is ok, egg.

Anyway as a veteran reflux-mum (DS was a happy spitter, DD1 had silent reflux) my big tips are:
use a sling
but lots of muslins and washing powder
use a dummy
hassle your GP until you get a referral or they listen to you. No baby should be in pain.

motherpanda be careful with rice milk. Aparently it has high levels of arsenic that can pass through breastmilk. It isn't recommended for under 4's for that reason. sad

highlandBird DS and DD1 were both blw and the reflux didn't stop until about 9 months. Sorry.

beckieperk Fri 23-Sep-11 14:19:02

Hi everyone. I have had a similar experience to buttonmoon78. My ds now 8 weeks was so uncomfortable just a week or so ago I thought I would go crazy. However have now changed his bottles (dr browns), have been prescribed gaviscon and using dentinox with every feed. He is like a new baby most of the time. I keep the gaviscon feeds for both his 10 o'clock feeds and nighttime feeds where necessary. This seems to make him a little more settled through the night. He still has bad spells where he screams and screams don't get me wrong, but compared to before it's like heaven.
Chances are all the things we have done have helped, but of course there's also the possibility he's just grown out of it too. Who knows/cares...so long as it's better.
Just a couple of questions - my ds is now so content during the day he is sleeping loads 2-3 hours between feeds sometimes, which i am presuming is why every morning 0430 am is party time in our house, should I just ride with it for now?
Also he is still having 150ml feeds (which he hardly ever finishes!!) every 3 hours roughly -again should I just ride with it? My ds was 12lb 13oz at last weigh in so not too concerned about his wellbeing - he's a big lad.
TIA. smilesmilesmile

buttonmoon78 Fri 23-Sep-11 14:54:25

Hi Beckie

I think you must be me! After gloating about how good he's been this morning he's screamed non-stop since blush. Now passed out in an exhausted stupor...

DS is having 4oz (120ml) but about 7 times a day. Sometimes he might have a feed where he only gets through an oz or 2 but generally he manages 4. It seems to have helped, rather than to offer him 5oz. Again, he goes 2-3 hours and yes, we are also having party time early doors though usually about 5/5.30 for us! I wouldn't mind so much but he generally goes down about 11/11.30 but is up 1/2 and then again 4/5. It was soooo much easier in that way when he was bf - I regularly beat myself up about that at night.

DS was 12lb 12oz last weds (nearly 9wks) so his weight is not causing anyone an concern. Apart from me earlier this week when I thought that the sheer amount he was vomiting must mean a slow down soon. However, with the improvement I'm hoping that won't happen. Am planning to get him weighed again on Weds next week in anticipation of the paed appt on Friday so it'll be a full fortnight then - a reasonable gap to assess what he's been up to.

beckieperk Fri 23-Sep-11 15:00:10

Our babies are mirror images of one another buttonmoon....I'm not counting my chickens that the day sleeps will last.....just making the most of doing washing, cleaning and reading my book (while eating Jaffa cakes) while it lasts!!! Ha.
I am also waiting for a paed appointment....said it could take up to 6 weeks....please god no!!!!
I'll keep my fingers crossed for you. Let me know any updates/tips as you have them....ds just stirring after another 1.5 hour sleep!!!

Bubandbump Fri 23-Sep-11 15:27:10

Camdancer how did you figure out gluten intolerance? I did cut out all gluten though honestly just thinking it was wheat, so after a few stable days decided to have porridge for breakfast. She has just started refluxing again arghhh..

camdancer Fri 23-Sep-11 15:55:42

Bubandump Did you use gluten free oats? I found out that even though oats are naturally gluten free, they are milled in the same places as wheat. So you have to try to find the gluten free oats, rather than just normal ones. Yet another expense. Grrr.

I did a total elimination - ended up on just chicken, rice, potato, courgette and butternut squash. I never managed to get her completely symptom free, but good enough. When I brought back the gluten she was writhing around again. She wasn't dreadful but bad enough for an intolerance rather than allergy IYSWIM.

camdancer Fri 23-Sep-11 15:56:22

Sorry, bubandbump. Damn those spelling mistakes.

buttonmoon78 Fri 23-Sep-11 16:25:44

Aaaargh.

Just had another major acid reflux episode at school. We were doing so well. It was gushing out of his mouth - almost pure acid with a few white bits of milk in. Poor love, he was shrieking sad

Beautifulbabyboy Sat 24-Sep-11 03:54:09

Well it is 3am, and am back on shift! Am so glad my hubby doesn't have to be in an office at 9am, so we can split the night in 2, otherwise we would be going insane.

So sorry for not responding during the day but my BBB who was happy and smiley when awake during the day, has unfortunately disappeared :-((. Generally now when awake at any time he is screaming. We bought a baby bjorn sling and it would appear that it is going to be a godsend. Am still nervous I will fall over and squash him - but hey I am nervous about everything at the moment, so will just add that to the list. :-))

Thanks for all the positive statements about Dr Lindley - it is actually because of mumsnet we are going to see him. I don't think there is any better recommendation than other mums. Might tell him "I am here because Buttonmoon said you were fab"

Also Buttonmoon, we bought the Dr Brown's bottles this morning! My DH said he thought they were a gimic - and I uttered the immortal words "but mothers on mumset said they were working...." so we now have 2! I think this phrase may start coming out of my mouth a lot! However, given we are now also on Gaviscon (another emergency trip to GP with a "you have to help me...") - can anyone tell me what number teat they used. It appears that Gaviscon thickens milk and it is not flowing easily through the teat - should we get number 2 / number 3 teats?

Finally, for the first time in a week, the little one is currently not asleep on my chest as I write this. Hubby in his shift, put him to sleep on his side in his cot (arm outstretched, small towel wedge in front of him). I am sat in the spare bedroom next door, can hear him through the walls, through both open doors and see/hear him on the video monitor (samsung - amazing - definitely recommend). There is no way I would go asleep when he is on his side - am going to speak to HV about it before I consider it. But has anyone found that sleeping on their side makes a difference to reflux babies? He still makes a lot of noise (i.e. grunts/growns every 2 minutes) but is actually calm which is first ie. haven't had to pick him up to stop the pain escalating..

Beautifulbabyboy Sat 24-Sep-11 04:06:59

Sorry highlandbird if your HV doesn't believe or support you. Try and speak to another HV - I have been really lucky and have a supportive team, and it does make a difference just knowing that people want to work with you. Is your GP supportive?

(Also even if your HV is a pain - be rest assured we believe and support you, and I think even just since starting on mumsnet i feel so much calmer - I really wasn't calm before....)

minicorrect Sat 24-Sep-11 04:37:48

Morning all [rubs bleary eyes]!

My DD is 7 wo and has been diagnosed by GP as having reflux and prescribed Gaviscon which we syringe into her mouth after all daytime feeds. Haven't bothered at night as she falls asleep feeding and S don't think it's right to wake her.

She will generally only sleep on her front or side and will wake up if we try her on her back. We co sleep though which seems to work and by the end of the night, when she's really congested, pre sleeps propped up against my tummy!

Reading through your posts above, I wonder if I should be trying anything else apart from Gaviscon? It has made a difference but she chokes and splutters on it and sometimes vomits it back up quite severely - to include all use milk too. Are we doing something wrong? It takes ages to give her just one dose and at nearly 11lb she should be on 2.

Look forward to getting to know you - although wish I didn't have to!! wink

Beautifulbabyboy Sat 24-Sep-11 05:06:21

Hi mini correct - am glad to see that you find sleeping on side helps. I wonder why it is?

We have just started on gaviscon, and after feed number 2, Little BBB did a vomit which put his previous massive vomits to shame. I don't know if that is the gaviscon or just the reflux taking another twist and turn. As we are bottle feeding we add the gaviscon to that - wish i could advise you on BF, but am no help there, sorry.

SkiBumMum Sat 24-Sep-11 05:10:21

To anyone in Herts - we have a Reflux Support Group here in Harpenden and it's fab. PM me if you want details.

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