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Infant feeding

Get advice and support with infant feeding from other users here.

Original poster

Support thread for all parents with reflux babies...

997 replies

PosieParker · 18/08/2010 16:00

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.

OP posts:
narmada · 10/11/2010 15:17

gad you got clinic appt, lady - that's good. can't type much now as got to venture out but hope all faring ok today.

Ladybiskybat · 12/11/2010 04:12

fonts I will defo share any info I get from clinic but so far all docs and hv same as other people say, have no idea about it. He's started turning away and kicking legs out several times during feeds now too. He seems in so much pain not hopeful about meds. What type of bottle are breastflow. We had a trial run of several tyres of cups but none were successful. Not looking forward to my night out tonight. DS1 being a right monkey too deciding he doesn't want to go to bed anymore. Was 10.10 before we got him to sleep tonight. :(

Fontsnob · 12/11/2010 09:47

www.breastflow.co.uk/ I got some from amazon and I made sure the teat was warm as well as the milk, she took it right away then. Fingers crossed for you. My GP suggested cranio-sacral therapy (I think that's how it's spelt) so I am going to look into that as the Zantac isn't working so well now and his other suggestion was to give the gaviscon as well. But that makes her poo really thick and uncomfortable to pass.

Fontsnob · 12/11/2010 09:49

Oh and I really really hope you get to enjoy your night out!

Ladybiskybat · 12/11/2010 23:04

Fonts thanks for the advice got my mum on it on her shopping trip today. She spoke with my aunty who's a midwife who recommended nuby silicone something. I very nearly didnt go out but did and sat by my phone for most of the first part of the night. But...he had milk from the bottle :) both boys into bed and we had a fab time watching bish. If anyone needs cheering up he's so funny! Hope you all had a good day too x

narmada · 13/11/2010 18:07

a night out! glad it was good, lady.

how on earth do people cope with a reflux baby and an understandably attention-seeking toddler?? words of wisdom please. it is totally beyond me.

i looked after both kids for 3 hours yesterday and nearly had a nervous breakdown. baby won't go in swing or bouncy chair- cries, sometimes will stop crying in sling but his head flops about (he will only go upright) meanwhile DD making incessant requests for me to do things that are physically impossible with a baby over my shoulder like face painting, etc, and instructing me to put the baby down in his cot! I had even planned activities for her to do, got poster paints ready etc, to try and head such situations off, but she didn't want to do what I'd suggested of course. She is 2.5. And as for when I'm trying to nurse my son....! I know her behaviour is normal but it is so hard to cope with her on top of a perpetually fussing baby who is either crying, slung over a shoulder, on the breast or fighting the breast. And all on about 3 hours' sleep a night.

by the time my DP got home the kids were both screaming and i had to run into the bathroom for a desparate sob. soon i am going to be doing 3 full days with both of them and to be honest I would rather go through labour once or twice a week than look after both kids.

I am on the verge of asking DP to take caring leave from work for a month or so. We are lucky in that we have very supportive employers and for that I am grateful but it is unpaid and we might struggle a bit :(

Someone stop me cracking up!

Fontsnob · 14/11/2010 10:22

Narmada really sorry that you are having a hard time at the moment. Have you got a decent health visitor? Just wondering because mine have been fab and have just sat and listened to me moan ( and I only have one baby - hats off to you coping with two! ) they also run a wellbeing group at our sure start center for mums who need extra looking after, perhaps there might be something going on like that near to you? My other suggestion is a sling. I borrowed a friends Kari me sling, my dd loves it, she is upright, close to me and you can do all sorts including the cooking ( mind you I never do as I'm paranoid I'll rest her on the hob by mistake! I know that's my avid imagination going mad ) I have also managed to feed her in it whilst on a walk! Did feel a little odd but she didn't seem to mind.

Lady really happy for you and your successful night out. Yay!

Ladybiskybat · 14/11/2010 10:22

Narmada, I completely understand, completely. My DS1 is 2.5 and very bright but very demanding. He knows exactly what he's doing when he asks similar requests from me. He even tells me to put baby in cot or give him to daddy. When I have both of them I spend most of the day feeling guilty that im not doing enough with either. It is so, so hard. I even do the planning thing likes painting or cutting and sticking but if baby is not good then it all goes out of the window. I find myself snatching 5 mins with toddler when baby has a cat nap. I am lucky that baby will be content in cot with mobile for 20mins or so before becoming upset but otherwise its a tough day. What type of sling do you have? I had a babasling but found it useless and just bought a traditional upright one from mothercare and now I dont know what id do without it. I only ask cos it has a bit for younger babies to keep head in and supported? You mustn't feel bad about crying. Sometimes it's the best thing to do. I cracked up on wed sat on the kitchen floor rocking backwards and forwards. It might seem like you are the only person who feels like this but you're not. Although I agree unless you've had a reflux baby you have no idea! Sending big hugs to you. Il say to you what my gp said to me... You're doing a great job just remember you're working with difficult materials :)

Fontsnob · 14/11/2010 15:45

Sorry just re-read that you have a sling Narmada so I apologise for useless advice!

cardamomginger · 14/11/2010 17:29

Hi Everyone,
Have been following the thread for a while, but have had not much time or energy to post! Firstly, so sorry to everyone who is having a rough time of it Sad. My 7 week old was diagnosed with reflux and cow's milk protein intolerance when she was 3 weeks and was started on ranitidine and Nutramigen. After an initial improvement, she started spiralling back down and her meds were changed to lansoprazole and domperidone (still with the Nutramigen). Again, after an initial improvement she seems to be getting worse again, and now she is regurgitating constantly when she wasn;t before. I guess I am wondering whether other people have found this - an initial improvement after starting/changing meds that doesn't hold out? I was wondering whether the domperidone might be causing the regurgitations? This is not based on any research, just a hunch because sometimes it seems that the milk just stays in her oesophagus before coming back out (although she rugurgitates an hour after feeding too - so that much come up fr0m her stomach). As the domperidone is supposed to help the sphincter between the stomach and oesophagus tighten with the aim of preventing stomach contents coming up, could it also prevent the milk from going down properly?

narmada · 14/11/2010 18:50

Fonts, don't be daft - it's good advice. I have been persisting with the sling today to better effect, trying different positions. Actually today has been a good one. DS has slept and fed quite well. And DP has been here, which has been fab. Even my DD has been quite content and I have had a bit more time for her. A good day - phew!

Lady, thanks for the really supportive post. It sounds like your son and my DD are similar. Difficult materials - that's classic! I will bear that in mind. Sorry you had a time of it on Wednesday. How was the weekend for you?

cardamomginger sorry to hear about your DD and I can understand about the lack of time and energy. I can only type this because DS is asleep (!) and DD is being occupied by Postman Pat.

I hope you find the right combi of meds soon. I can't answer your question about the domperidone directly, but I do know that my son is on it too and he has gone from being a silent refluxer to a very unsilent one over the last 4 or 5 days. So it appears not to be keeping the sphincter closed as claimed but maybe I am missing something.

With regard to the medications apparently stopping working after a while, has she been reweighed and the dosage recalculated? I gather that the dosage needs to be adjusted quite regularly. I am not sure how regularly it needs to be reviewed, though - no-one really told us that. I have given it about 2 weeks and we have nearly run out anyway so I have to go back this week.

narmada · 14/11/2010 18:50

Sorry Lady, I didn't mean that your eldest was difficult materials (or my DD for that matter!) realised it could read rather insultingly!

cardamomginger · 14/11/2010 20:31

thanks narmada. hope things get better for you too. the deterioration occurs literally within a few days - we've only been on the new drugs since 2/11 and after an initial improvement over a few days she started getting worse again. We have an appointment at GOSH on Tuesday. We shall see...

Fontsnob · 14/11/2010 20:33

On a lighter note it seems dd is calmed by Take That and I just found a buzzy bee baby bracelet thingy velcroed to my bra. Good times.

cardamomginger · 14/11/2010 20:57

DD likes Guns 'n' Roses and ZZ Top... Confused

Ladybiskybat · 15/11/2010 02:33

cardamomginger im not too sure about the anatomy of it all but I have definitely had several meds that have worked for a while and then it's all gone wrong. My DS put on weight very quickly at that age about a pound a week and you definitely need to have the dose adjusted accordingly. We were on Lansoprazole until last week when they thought it wasn't suiting my LO so we're now back on dom and ranitidine not that they're doing anything though. I always find initially there's a change then downwards we go. Hope gosh appt goes well, least you've got some good experts to ask. Narmada dont worry about it my eldest is definitely difficult materials at the min-no offence taken :) We've had a tough weekend but DH has been home which helps and he's back to work tom. Ive noticed lots of these twitching things now. He'll be feeding away nicely and then pull off, turn his head to opposite side and scrunch his body like he's doing a sit up and then twitches his legs. It seems to bother him tho cos he is usually mid feed and feeding well. Have got a friend of mine asking her gp friend about Sandifer's tom so will post anything of interest. Really hope clinic appt comes thru this week or il have to go back to gp about meds...they say to give 2 weeks to work cardamomginger so I always wait that long before hassling him again so I dont get the lecture. fonts am loving the take that and velcroed bee image :-D

narmada · 15/11/2010 13:48

Lady I hope you get your appointment and get to the bottom of the twitching thing. I am hoping it's just a reflux thing - sounds like it could well be. I guess being in pain can make a body move in all kinds of strange ways.

The 2 week lecture - ha ha, I know what you mean. There was no way I was ploughing on with gaviscon for 2 weeks though. It clearly was doing nothing.

On our part, had a lactation consultant around this morning and she has spotted DS has a bloody posterior tongue tie and a narrow, high, arched palate which is making him less efficient at feeding than he would otherwise be. And clicky, and windy too as he swallows gallons of air. Why is nothing straightforward??? She suggests getting it clipped (the tongue tie) but I am a bit Confused - dunno what to do.

Ladybiskybat · 15/11/2010 14:40

Narmada how old is LO sorry im rubbish with memory at the min and I access this on my phone so cant check again. Anyway I think upto a certain age the babies have no feeling in that bit of their tongue and its best to do before 12(?) weeks. I had a friend who's DS had it done not long ago. My DH should have had it done when he was baby but it wasn't picked up. It doesn't affect him too much but cant stick his tongue out properly cos its like its stuck down inside. I know what you mean though. Ive been up since 4am and not much sleep til then. My eldest is being soooo naughty. Refusing to go to bed and screaming. He's smacked me in the face a couple of times and emptied a carton of fresh orange onto the floor. DH flipped out last night. Bad times indeed :(

narmada · 15/11/2010 14:57

oh lady, what tine of it you're having. I so feel for you. I don't know what to say... just sending big hugs. do you have any help with eldest or can you get anyone round??

narmada · 15/11/2010 14:58

My DS is 4 weeks, only reason i'm hesitating is it's a posterior tie, think minimally more invasive....

Ladybiskybat · 15/11/2010 15:40

Thanks for msg. My mum came round this morning to have baby so I can spend time with toddler. I know he gets so much time from me but still beat myself up about it. It's awful thinking of them having to have something done so small I was the same when they thought DS2 had pyloric stenosis...but if he feeds better? Maybe worth it ?

narmada · 15/11/2010 15:50

Glad you have some support at least some of the time. It's so hard. But you're doing it. Well done! I think you'll deserve a fortnight in caribbean when things settle down....

Yes, I think probably worth getting the TT done.

Got to go now, dared to put DS down in cot so I could go to the loo, now he has woke himself up hiccuping and writhing. Poor sausage.

Got GP tomorrow. Going to ask for a referral to paed. Think it's time to wheel the big guns out...

cardamomginger · 16/11/2010 15:53

Thought I would share what our consultant at GOSH said this morning, in case it helps anyone. Briefly, DD is 7 weeks old and has had symptoms of reflux and diarhoeah (sp?) since 2 weeks old and eczema since 3 weeks old. Since then she has been on Nutramigen and ranitidine, which was then switched to domperidone and lansoprazole. Each time we've started something she has shown an initial improvement followed by a decline. Most recently she has started regurgitating, looking bloated and has been constipated (although the poos themselves are quite loose). The consultant, who had not seen her before, said that it was not reflux!! The combination of her gastric symptoms, her eczema and the pattern of initial improvement followed by decline leads him to conclude that she is experiencing an allergic reaction with associated inflammation. Her gastric symptoms are caused by the nerves in her stomach misinterpreting her stomach stretching as pain, and the regurgitating is because her stomach goes rigid, won't expand and so the milk comes back up. This is all part of the inflammatory response. Her eczema is part of the same allergic reaction. He's told us to stop the domperidone because it's doing nothing for her, stay on the lansoprazole - by reducing stomach acid production it is reducing the volume her stomach has to cope with, although reduction in stomach acid is not what she needs perse iyswim, and to change to Neocate milk. He said the Neocate is better from an allergen point of view (has never been near even a whiff of cow's milk) and the stuff itself promotes healing of the gut. Review in 4-5 weeks, although even once the inflammation has gone it can take 8 weeks for the gut nerves to settle.

Thought I should share in case anyone finds this useful.
Hope everyone is having a better day.

Ladybiskybat · 16/11/2010 18:25

Thanks for sharing cardamomginger at last an explanation for you and now they can treat it properly. I remember reading somewhere in my endless research episodes that a lot of babies with allergies are misdiagnosed as reflux babies. I dont think we have that here mind, no skin issues and definitely no constipation! narmada how did gp visit go? Hope it was successful. We're still plodding here. DS1 was good last night, only 2 trips into him combined with only 2 feeds for DS2 = semi decent sleep for me :) although DS2 has got horrid sneezey snuffly cold, lovely. Hope you are all well and smiling...a bit!

bethylou · 16/11/2010 21:01

Haven't posted on here for a couple of weeks but heard today from my HV about a lady who she is supporting. The HV picked up that the baby had reflux and was terribly unsettled, but as a HV is not allowed to diagnose, she suggested review by GP. GP said 3 week olds don't get reflux and he wouldn't prescribe meds as the baby was not losing weight. The baby then suffered a non-accidental injury and there is a child protection case occurring as a direct result.

Hearing this made me so sad. I'm sure so many of us can totally understand how someone can reach that point with a refluxy baby (though I'm obviously not saying it's okay to act on it) and it makes me mad that GPs have such a variable understanding of the condition and the effect it has on families.