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 banamarama we found the gaviscon made ds constipated as well. Our reflux seems to be related to CMPI however so we stopped. We were on comfort at the time but went back to normal when we realised how thick it was. I don't know how much help comfort will be for the reflux -it might be worth just trying the first milk again and if things get worse maybe try one of the milks for reflux?

question to those who tried nutramigen or other milks -is it ok for him to be producing large, though soft, pellet type poos as he gets used to the new milk? When we switched to pepti they went runny and then back to normal. It's not the weaning as he's on the same sort of food as before we switched milks.

Also when a child is constipated or producing such poos, could it be a cause for not eating quite as much?

Birchykel our referral came through at a 3 month wait...absolutely ridiculous when you have an ill baby to deal with. We asked the GP and HV to write to the consultant to request an earlier appt...that coupled with phoning paed's secretary every other day and making it clear we would take ANY appointment at any time got us seen in 3 weeks.

hellitops cant say the large pellet poos sound familiar. When we started DD on nutramigen (after SMA Gold) poos were still fairly loose but turned very green. That was probably the biggest change we noticed....

Question for anyone using carobel.... has anyone tried the spoonfeeding paste method instead of putting into bottle? DD seems to struggle to take the thicker milk... I think she's gotten used to the very thin consistency of nutramigen and is drinking a lot less at each feed.

After a good spell of controlling her reflux ...we seem to be taking huge steps backwards. . DD is now gagging and choking after every feed (thankfully not screaming) and the terrible wheeze and yelping sounds we had in the bad old days of reflux are now returning. Paed wants to give her domperidine on top of her omeprazole dose..

has anyone else found reflux has gotten worse during teething? Is it worth upping meds to get her through this?

Thanks BagofHolly we tried syringing when first prescribed the Gaviscon and DD absolutely hated it which was why we started adding it to the bottles :(

Hellitops can I ask what CMPI is? Still new to all this and lots to learn! Not sure if it's coincidence but DD was worse than ever this afternoon after trying normal milk again. Think I'll try one more bottle tomorrow as she wasn't having the best day beforehand so I guess it may not be linked and see how we go.

When DD manages to poo ok we seem to get the same large soft pellet type poos you describe too so not sure if thats her still getting used to the Gaviscon maybe.

Friday night discussing poo....and I've run out of my my life is glam as a mum eh?!

All the dosing is weight related so it's absolutely worth upping their doses, otherwise you're effectively under dosing. That's one of the most frustrating bits about it - you think there's a light at the end of the tunnel and then they grow a bit and the old dose isn't enough!
I found the domperidone to be a miracle in a bottle. The difference it makes is astonishing.

Re referral, we asked to see the paed privately and were seen at his next clinic.

Hi, can I join? DS is 6 weeks old and I think he has reflux - lots of curdled milk and acidic smelling vomit, wet burps, arching his back and crying during feeding and choking then coughing up curdled milk :( Apart from that he seems ok, has put on 1lb in the last 2 weeks (EBF).

I mentioned it to the GP at his 6 week check but he was very dismissive, and said the only treatment was infant gaviscon and it would be difficult to give as I'd have to express milk to mix it into. I'm annoyed that I let him fob me off but I got the impression he was trying to get me out of the door as he was running late.

I've slanted the cot so the head is higher than the foot and I keep him upright for 30min after feeding (bit of a bugger as he hates being in the sling so it makes my arms ache!). Is there anything else I can try before I go back and see a different GP?

Thank you

I'd start him rightaway with infant gaviscon which you can buy at the pharmacy, and make it into a paste, let it down with water to 5 ml and syringe it in.

Your doc is talking utter, utter shit. Find a local private paed at your local private hospital, call their secretary and get an apt. Then call GP practice manager and ask for a referral letter to be faxed. It's absolutely no cost or problem to your GP to do this. Your fist apt is £150-£200 and that way you get your baby treated v quickly and properly.

Thank you BagofHolly - I'm off to get some gaviscon now, didn't realise that you could get it over the counter! DP is going to check with his work health insurance policy to see whether it covers DS but if not we'll have to see if we can find a spare £200.

You might have to tell the pharm your HV has recommended it and you're waiting to get a prescription. Hope your insurance covers your LO - so so worth it - we've seen our paed 5 times, with twins so there's a couple of grand and they're only 7 months old!

Hi everyone

Sorry to see the newbies but glad you have found this thread. It's very supportive!

I have a quick question for the reflux veterans. What pain relief do you give your LOs?

The reason I ask that calpol (and other parcetomal products) say not to give to babies who have domperidone. And I've heard somewhere that babies with reflux shouldn't have ibuprofen. So what the hell are you meant to give a baby with reflux who is on domperidone?! My DD has her third set of jabs next week and I need to know what pain relief to give her- after her 2nd set of jabs she screamed her head off and I want to be prepared this time.

Thanks in advance

Gosh I never knew that! Where does it say that?T

It says in the small print of the leaflet... I must confess i gave it to my DD she instantly projectile vomited and so I read the small print after () and it said not to take if on domperidone. I've checked the small print of a generic paracetomal and it says same thing. I'm thinking of calling my paed next week to ask his advice...

Sorry to be clear last post in ref to calpol. I think I read on a reflux forum re Nurofen tho small print does NOT say anything about reflux or domperidone so am wondering if that might be ok....

I've just had a v quick search and it seems that the domperidone can potentiate the effect of the Calpol and that's why domperidone and paracetamol are used in combination, for severe pain such as migraine. So it's an interaction you have to be aware of, but not a contra indication. Our paed has never mentioned it and I've used it loads, with his knowledge.
I suspect you have to keep an eye on how much you're using if in combo with domperidone, that's all.

Ibuprofen can cause stomach irritation - it's certainly not recommended for adults with indigestion, so I can see why it might not be advised for babies with reflux. If I had to give one I would personally pick paracetamol.

Thanks for the advice. Will probably try DD with a little paracetomal but will try a different brand than calpol as that made her sick....calpol contains loads of e numbers , the same as those contained in gripe water, and both made DD sick....

Hi daisylou we were given a type of paracetamol called medinol pediatric from the hospital when his ulceration on the birthmark was causing lots of pain. We found it worked quicker and is a nice clear colour, so I would guess it has less e-numbers. Don't know if pharmacies sell it or anything but it might be worth a try.

banarama CMPI is cow's milk protein intollerance/allergy. It can look a lot like reflux or LOs can have both. My ds looked a bit like he had silent reflux but it didn't explain his red, itchy eyes or explosive and painful wind, which the CMPI does. His wind went away for a while on comfort milk, which has the milk broken down a little more. We tried pepti milk and it sorted out the wind and made the eyes a lot better, but then he started struggling with his feed so they changed milk.

Good news though (fingers crossed) he started eating more of his solids and bottle again yesterday so I think his system is getting used to the milk and the constipation is clearing up :)

Thanks hellitops will look into that

nemogirl sorry to hear your LOs symptoms are worsening. Funny you mention teething and domperidone. My DD is teething and today we had a projectile vomit- the first in weeks but we are also trying to wean DD off her domperidone. I, like bagofholly, have always found it to be miraculous so was reluctant to start reducing it. Even with my DD teething it seems remarkable that the day we start lowering the dosage she has a projectile vomit. I'm going to go back up to the original dose through this teething stage.. Let us know how your LO gets on with it!

Thanks Nemogirl, did u wait till u got a letter before asking for a cancellation? I will def be doing that can't wait 3months that stupid. Sorry to hear ur going thru it again, my girl is 9wks and seems to be teething already and yes her symptoms are worse again.
Hope things get better for u....and everyone else. X

bagofholly could I pick your brains please? I think we share the love of domperidone - a lot of people seem to think it does nothing but it seems to be only thing that stops my DD from projectile vomiting. I was wondering whether your lovely twin with the cmpi is also on Dom? My paed thought we could wean DD off Dom but it has had disastrous results. He thought she only has cmpi but it seems she may have a touch of regular reflux as well so thinking of going back to him. I also wondered how often you increase the dosage wrt weight gain? From looking back at my notes it seems we need to increase every 2-3 weeks and an increase in dosage by only 0.1ml seems enough to make a big difference. However I'm doubting the Dom and wondering if it's coincidence. How can 0.1ml make that much difference?! If you have time to reply I'd be really grateful for your experience of Dom. Thanks so much in advance.

Hey all, just a quickie as have no joy from doctors. Kinda same thing as you daisylulu my girl is on ranitidine and domperidone only has 0.3ml three times a day. Just wondering firstly if I should go back to docs and ask for it be increased as she is bigger now or has anyone just increased it without advice as such? Also anyone on same meds when do you give you lo the meds? before a feed, after, inbetween feeds? My girl has been on it since she was 3 weeks and is now 9 weeks. I normally give it to her breakfast, lunch and dinner time.
We are waiting to hear from hospital too but in mean time she is becoming worse.
Any advice gratefully appreciated.
x

Oh birchykel you poor thing - how rubbish that your GP is not helping you in the meantime while you wait for your referral.

If it were me, I would ring the surgery where your DD is registered and ask them to fish out the referral. I would ask what degree of urgency it has been marked with - GPs can indicate on the referral what priority the referral has I think. Or at least that's what my GP did with our son when he was tiny. If it's not been given a high priority I would make abit of a fuss and ask them why.

Re upping medication... well I think it's utterly ridiculous that your GP is making you wait. If she had the confidence to prescribe the ranitidine in the first place, why will she not increase it to the maximum dose if the piffling dose she's given you is doing nothing??
What did they decide about the milk?

To be honest, if the gp wasn't forthcoming about it and I had a spare few quid, I would go to boots and ask them to order in something like Aptamil Pepti 1 - one 900 g tin will probably last you about 5 days and should cost about £17. You could be trying it in the meantime while you wait for the paed appt to come through. The alternatives are nutramigen or the very expensive and unpalatable Neocate/ Nutramigen AA.

Ps I don't think it matters when you give ranitidine, but domperidone is best given about 20 mins before a feed.

Is your DD refusing feeds?

Hi Narmada, just a quickie, going to docs today as last night was the worse poor girl was screaming for hours in pain worse she has been in a long time.
Getting so hacked off with the docs now so today is a good day to go see them as I wont take any crap.
Thanks for the advice on dosage and milk. Will update you.

Hope all is well for you .x

Hi daisylulu - havent started the Domperidine yet.... I'm really reluctant to put her on more meds as I'm still pushing for her to be given a neocate trial to rule out the possibility that some of her reflux symptoms are allergy - related as opposed to reflux. (we still have those terrible loose nappies after most feeds) Our dietitician appt is on monday so hoping she will take one look at DD - notice her red, itchy watery eyes, allergic shiners, red rash all over neck and chest and listen to her wheeze after feeding and tell me to put her on neocate! My paed still thinks she only has reflux but after mon - I'll take matters into my own hands if I'm getting nowhere! . I think I've given them long enough to see if DD improves on her current dosage of omep. Have lined up a private referral and an order of neocate just to be on the safe side...

Teething has definently affected her reflux. On the days when her teething is reallly bad - I've noticed that she refluxes constantly between her 4 hour feeds but on days when teething is bearable for her - hardly refluxes at all. Its difficult to make any decisions on upping/adding to her meds at this point as she is so unpredictable from day to day. Sorry to hear your LO is not doing too well...I hate this reflux thing!!! sob

How did your LO get on after jabs? Mine has 3rd set next week - really dreading that 'episode' post -vaccination! I think this time I'll give her the calpol straight after jabs and wait on tenterhooks to see what happens in the next few hours....

Birchy we didnt wait until the letter came through but just pestered the secretary constantly. I think it takes a week or two for it to go through the system as narmada says - reviewed by head paed and then allocated based on urgency to a consultant who then decides when you will be seen. We were told we had been given a 'routine' urgency rating - despite having taken DD to paediatrics several times as she couldnt breathe!! Keep hassling them and get your GP to get off his/her ass and write a follow up letter.... My DD was about 9 weeks when she was seen too - really hope your appointment comes through quickly - I remember well the days of holding a permanently arched, screaming DD 24/7... Try and get omeprazole when you do get your appt - does your LO have silent or not silent (vomiting) reflux? the paed we saw took one look at DD and said ranitidine would make no difference to her reflux no matter what dosage she was on and said omeprazole was the best med for her. Not quite sure what that logic was based on - but we were told DD probably had really bad acid burn and that needed to be treated asap. Fingers crossed for you, x

birchy one more thing - has your HV referred you to the speech and language therapist and/or physio? Our HV was fab - we got seen by both, they monitored her feeding (she actually didnt have any feeding issues except for the fact that she struggled to take her milk while refluxing but thankfully she's a greedy one so kept on going regardless) and the physio for her possible sandifers and constant body flexing. They also wrote to the consultant and that might have helped our referral to be sped up slightly. If anything - they might be more help than your GP re advice and support as they see babies with reflux all the time...