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.

Hi there
Need some advice. My LO is 6 weeks old and on Ranitidine for her reflux. I have had to change to formula feeding as EBF was about to tip me over the edge, she could have comfort sucked ALL day long and I just didn't know when she was hungry/in pain/needing comfort, as a consequence have massive over supply issues now! And I have barely been out of house as, as soon as I put her down she screamed blue murder. Symptoms seem a little better now on bottle ESP. The colic ones.
Anyway, she seems to get on OK with SMA treated with Colief to aid her colic symptoms, however reflux is awful. I can hear everything coming back up and she starts to choke if you lay her down, even after being held upright for 1/2 hr after feed.
She has very rattle/raspy breathing and it sounds like there is lots of liquid floating around.
The ranitidine seems to work some way to treat the pain but I need to get the liquid to stay where it's meant to be.
GP has prescribed Carobel but not to be used at same time as Colief??? Anyone know why?
Is Carobel the answer, little worried about using it. Finally how to administer? The instructions are very confusing. I think I would like to try from spoon but not sure how to go about this?
Any reflux veterans got advice?
She is bringing up milk, posseting, projectile vomiting and has milk out her nose at different feeds of the day!

This may not be the popular view and I know some GPs know their onions but I'd push for a referral asap to a paediatrician with an interest in gastroenterology and get your baby treated by an expert. We saw our paed privately - our insurance covered it but it would have been £150 and we saw him the same week we enquired so no waiting. All our prescriptions have been converted to NHS and it's been the best money we've spent.

To me (not an expert) you may need more drugs. Also, my boys have never slept flat - they can't - so are either in their bouncy chairs, hammocks or cots propped up on books at one end.

Re colief, our paed said we could use it if we want but it wouldn't make much difference. No idea why your GP had said not to use it at the same time as Carobel as I thought Carobel was just a thickener.

yoga re carobel I personally think the most effective way to administer it is by adding it to a bottle and using a variflow teat. We use about two scoops of carobel to 8 oz and this makes it sufficiently thick to stay down. It used to be made from carob seed flour but is now made from locust beans, so one concern with it is that you are essentially introducing a non-milk foodstuff into the baby's diet at a young age. However, it's been a lifesaver for us, and has definitely also reduced the amount of washing I was doing.

I cannot imagine that there is any reason for colief not to be used at same time as carobel. I would go back to him and ask why, or ask the pharmacist for further advice. Carobel is just a thickener, and coleif is just lactase to break down the lactose in the milk.

If you had an oversupply of BM, that could have been contributing to the problems your baby was experiencing. Babies can experience discomfort, vomiting etc if there's an oversupply issue. I wasn't sure whether she was partially BF or fully FF now?

Also, and you probably don't want to hear this, but you might want to consider whether cow's milk protein intolerance is a contributory issue. If thickened milk and ranitidine seem to help significantly, then there is probably no cow's milk issue, though.

Hi, thanks for replies.
I will persevere with the Carobel for a few days and see if I can get it right, added 2 heaped to 6oz and used notch 1 of a variflow teat on Saturday, perhaps it was too thick and that why all the screaming!
I was worried that the flow was too quick with the bigger teat as she is only getting used to bottles and is 6weeks, says the variflow are for 3 months +
Holly, I have BUPA through work, so will check out if a paediatrician would be covered in policy.
Narmada, I was really worried about the cows milk issues and cut it out totally for weeks when I was breast feeding, didn't seem to make her any more comfortable and poos seemed to burn her like acid! Now with the Colief things seem to have settled in that department.
I have stopped breast feeding on the advice of the HV as I was getting very down and distressed and my LO was a very lazy feeder sucking for a couple of minutes and then falling asleep. Every feed was rolling in to the next and I couldn't set her down/leave the house as she would go purple and scream the house down. We had one good day of breast feeding which was the day the Ranitidine was introduced. Only lasted one day! Fed for 45 mins to an hour and then seemed satisfied.
Falling asleep typing, bad night last night. Must sleep now she has decided to rest for a while. Thanks.

Yoga, getting the teats right was just another maddening factor to deal with. Ignore the age recc - it's based on the flow of ordinary milk, not thickened milk. We use TTippee 3 and they're fine - anything less and they block. It's worth giving the teat a squirt yourself during feeds to make sure it's still flowing. Good luck x

I've missed a lot! Hope everyone is coping.

DS is 13 weeks today and does seem to be better. Possets a lot but very few whole-feed vomits. Still has at least one screaming fit a day, but that is a massive improvement. We are on Gaviscon, ranitadine and colief. Making the switch to formula now. HV suggested using the comfort formula. Its thicker and partially digested so I'm not using the gaviscon or coleif with it - though she said I'd still need the gaviscon "for the antacid" - but I'm sure its just a thickener?

He can noe lie flat for a few minutes before getting into difficulty so nappy changes are much more relaxed!

Perhaps check with the formula company you use? SMA staydown stipulates that you shouldn't use any thickening agents such as gaviscon with the milk as it's already thicker than normal milk.

Good luck with it.

hi all

i'm so thankful i've found this. have just come back from seeing gp and he was unhelpful. she was on gaviscon but that caused more problems then it solved.

my dd is 9 weeks and has reflux, we give her sma staydown (and doing all the usual swing, sitting up ect...) since she has been on the sma she has been loads better. she is still very sick but it doesn't seem to bother her as much as it use too. she seems a lot happier and had less of the screaming. putting her to sleep is still a problem but touch wood its getting better

if anyone is gonna try the sma, just to let you know you have to make it with cold water and you can't shake it for some reason so you have to swirl it. also you'll need a bigger size teat

god, just read that back and it sounds like i work for sma lol

Good idea gallicgirl, we are using C&G and they have been very helpful when I have phoned before.

peachyuk - have you raised up the cot at one end or tried a sleep wedge? We have a sleep wedge now and it has made lots of difference to his sleep.

cobweb - yeah we've got a wedge it was her easter present from nanny lol

ohh just a quick question - does anyone do 'tummy time' i've stopped now cuz of the sickness. just wondered if anyone had any tips

We don't do tummy time. They just instantly empty!

hahahaha! tummy time was a definite no-no until recently for DS for exactly the reason you describe peachyuk. At 7 months he can tolerate about 30 seconds before crying to be turned back over (can't reliably do it himself yet, poor lad).

I know I posted about how much better things were, but having a bit of a down day. Just wish we could have a feed without screaming before/during/after. I hear most mums find feeding a pleasant, bonding activity. Its just stressfull in our house :(

Oh cobweb I've been there. It's horrible. I still have to distract DS while he's drinking his milk. Now he's older, he's happy if he can hold something fascinating (!) in his hand while he drinks it. Stops drinking as soon as he drops said item and lots of tedious replacing goes on but maybe worth a try if you haven't already.

Are you being referred for feeding therapy or anything?
What's your baby taking for the reflux?

He is on gaviscon and ranitidine and coleif. He is on about 50% ebm with coleif and gav and 50% comfort formula. We are just being treated by the gp, so no referrals. He isn't really holding things other than our fingers and his muslins yet. Things ARE better, but I still need earplugs :( The problem with a reflux baby is that you don't know what is normal, you know? so things have improved, but I don't know if they are normal now - but I don't think all babies scream while you wind them do they?

No, babies don't usually scream while you wind them but both my refluxy babies have done. Apologies if I'm repeating myself/ others but have you ruled out cow's milk protein issues? That can cause or contribute to the troublesome feeding and screaming you describe.

If your DS is really in discomfort and is struggling to feed, then I would push for that referral. I don't want to scare you but it is something worth dealing with as effectively as possible before habits and behaviours become learned. There are more effective meds than ranitidine that he can have if you want him to (e.g., omeprazole/ lansoprazole). Ranitidine commonly stops working after a while IIRC, and chances are your gp may have only prescribed a low dose?

yep my dd screams when you try to wind her. half the battle is trying to move her as she goes really stiff

i'm back to dr's next week with her as i phoned dr's to ask for something else to give her (sma stay down my arse it does) . he said no not until she is 4 months then i can start weaning her (she is 10 weeks). i said in that case can you give me some calpol then as that the only way i can feed her.

he is now going to see us next week :-)

What a load of crap your GP is speaking, peachy. Is SMA staydown not working then?? HAve you tried not winding or putting a dummy in when you take the bottle out to wind? That used to work with DD.

Does your DD have eczema or skin rashes, peachy? If so, def ask for a trial of a hydrolysed formula. About 7% of babies IIRC are allergic to normal cow's milk formula and it can cause reflux-like symptoms - e.g., vomiting, food refusal, dairrhea or constipation, and often eczema.

Your GP can also prescribe carobel, which is like gaviscon but doesn't constipate as badly, and you can make the milk as thick as needed or as thin as she will tolerate.

Plus, if cow's milk allergy has been ruled out and your baby's screaming through each feed, then she needs a referral to a paedatrician. Badger your GP until he or she gives you one.

I'm bloody miserable! I thought this baby malarky would be lovely. I was fully prepared to be a yummy mummy, taking my LO out and about popping her on the boob, winding her, changing dirty nappies etc.
Not, changing to bottle, administering medicine, making up feeds, listening to constant crying, a baby that never sleeps, constantly grunts and looks like she is chewing gum for most of the day! Barely smiles, flails arms and legs about so much if she does sleep wakes herself up. Has white tongue all the time, bubbles at the mouth, hiccups after nearly every feed and the new symptom stops breathing and wakes up choking!!!!!
What on earth do I do? I'm getting so depressed and I am wrecked and the house is a mess!
Is it normal that baby yawns and is tired, I bounce her off to sleep, put her down and 5 minutes later she is awake screaming the house down? She has turned a darker shade of purple about 5 times today!
Can't cope any more!

Oh Yoga, I really really feel for you! What I'd do in your shoes is look up your nearest private hospital. Phone and see which paediatricians practice there and if any have a special interest in gastroenterology. The secretaries should know. Then make an appointment. Then call your GP practice and ask for a referral letter to be faxed over. You NEED to see someone who specialises in this. If your insurance covers it, so much the better, and if it doesn't, then you're talking about £150, which I bet you'd pay in a heartbeat for some respite from this. If you're near Essex, we see Dr.Soe, at Rivers Hospital in Sawbridgeworth. He had us well on the mend within days. I know I'm repeating myself from an earlier post, but you really need to get proper help.sending you a big virtual glass of wine x x

narmama - the sma worked for about a week, she was a totally different baby (like what you read about in books lol)

when she first suffered with the sickness i took her to a+e. they admitted her and she was seen by a pead then. they ran loads of tests on her, poor thing looked like a pin cusion by the end. it was then i was told it was reflux

yoga - i really feel for you my dd is the same apart from she goes a reddish blue

peachy I wonder if they did consider milk protein issues though?? There is no reliable test for it unless the baby has a true milk protein allergy (think hives, anaphylactic reaction). It's quite common and can be relatively easily addressed.

I wonder why the SMA stopped working...that's a bit of a mystery. Poor you and poor your DD.

Did they send you away with just gaviscon from hospital ? If it's reflux she probably needs something other than thickened milk, like ranitidine/ domperidone or omeprazole. Gaviscon is rubbish in my very humble non medical opinion.

yeah they sent us home with the gaviscon which again worked for a while... thinking about it might mention it to gp