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.

Yoga - I'd like to know the answer to this myself. Both the GP and paediatrician I saw thought that if it was cmpi then the medicines would not work (though I'm not so convinced but hey I'm not a doctor!). Also, they said usually babies with cmpi have some kind of rash (again from what I understand this is not always the case)...

I was thinking about this earlier (long drive with baby asleep in back seat, not much else to do!). If you eat something you are intolerant to eg. Onions and it gives you heartburn or indigestion you take an antacid and the discomfort caused by said food disappears. Is this the same with CMPI and acid reflux?

Yoga - I totally agree with your logic. Only other thought I have to add is would you also expect the discomfort to be more AFTER feeding? In Js case her discomfort is only during feeding. What is your LO like?

My mums friend LO had cmpi and she said her baby screamed after eating, was never sick, had a sore nappy rash and tried antacids which did not help in the slightest.

It's all so bloody confusing isn't it?!

My LO is really fussy during feed and looks angry and then crys after a feed. Sometimes we get purple face screaming and lately lots of vomiting.
Good news is that the Cow & Gate pepti junior that the GP prescribed seems to be going down better than the Apatmil Pepti, so fingers crossed it stays that way and that I will see an improvement in the next few days.
She is certainly more calm when eating and after minimal fussing is now asleep on my shoulder.
I would imagine if you keep putting something in a wee tiny tummy that doesn't agree with it the pain/fussing would be almost immediate. I think there are 3 types of reaction to CMPI your LO sounds like type 1, which is immediate.
New course of action - back to 10mg of Omeprazole and pepti junior formula, if I see improvement then within the next 4 weeks I will start gradual reduction of meds to see where we get.
I sincerely hope this works, feel like I'm always trying to solve a puzzle!

Yoga glad to hear the new formula is going down better. Very best of luck with the new plan. Keep me posted as to how you get on.

For us the ranitidine and domperidone increased dose seem to be helping and J has managed to even eat calmly today. Fingers crossed it continues. If it doesn't then am going to change formula but will stick with current strategy at the moment!

Sorry just skimmed the postings here, got to dash off in a sec, but re. flavouring pepti - use as much nesquik as you need to get your babe to take it in the short term. We were using almost two smallish teaspoons at first, but this is a great deal of sugar over the course of the day so you may want to work on cutting it down as time goes on. Alternatives are golden syrup or I have recently been using agave nectar which has a marginally lower GI rating. If you could get your baby to take pepti for a good couple of weeks some way or another, that should be long enough to establish whether cow's milk is the problem.

Neocate is absolutely vile. It tastes far far worse than Pepti. We tried for nearly 3 months to get DS to drink it, and he wasn't having a bar of it. Pepti is based on whey protein (hydrolysed for lower allergenicity) rather than free amino acids like Neocate. If your baby won't take Pepti it's very unlikely they'll drink neocate IME. However, if your baby has a true milk allergy (think hives, swelling, anaphylaxis) and if BF isn't a possibility, then it's got to be Neocate I reckon.

As to whether PPI drugs would help if the main prob was milk intolerance, I think the answer is possibly yes. CMPI often causes repeated regurgitation and also causes milk to sit in the stomach far longer than it should as the body has trouble moving the food through the digestive system - this means more reflux episodes. However, once the CMP issues are sorted, then the PPI dosage should be able to be lowered or the medication completely stopped (providing there is not reflux alongside the CMPI).

Hope pepti junior carries on working yoga.

daisy our DS has CMPI and used to plain refuse milk feeds - the discomfort will be both during and after typically. CMPI can cause stomach cramps, and can also cause something called oeosinophilic oesophagitis (sp?) which basically means allergic inflammation of the oesophagus.

Am bumping thread as it was not showing on the thread list and I 've just told someone about it.

Can I ask if anyone's little one has had improved i.e.reduced mucus/snot on soy milk? My dd is so snotty and I'm sure it's cows milk formula as it cleared up immeiately on goats milk formula. He went off the goats milk though so am thinking soy. She's eight months old now and reflux is getting better. Just worried about her constant runny nose and chin rash.

gregoryhouse it sounds like your DD has an issue with cow's milk protein. This can cause reflux symptoms. Soy may or may not be better for her, but for many babies with cow's milk protein intolerance soy protein is also an allergen. A GP could prescribe a hydrolysed milk but make sure it's a palatable one as there is IMHO no way you'll persuade an 8 month old baby to drink neocate or nutramigen!

Hi ladies. Me again.

My LO seems (touch wood touch wood touch wood) ok in terms of crying and puking. However, she is now only wanting to take between 3-4 oz per feed where previously it was as much as 6 oz. She will start to fuss on bottle after 3oz and then refuse to feed anymore. In every other respect everything else seems ok. Does anyone have any thoughts? I feel stupid going to gp if everything else is ok but it doesn't feel quite right in my gut..... It may be that normal babies do fluctuate in terms of how much they eat and that she is fussing because she is full up. However I have a tendency to overanalyse and put everything down to the reflux! Any thoughts much appreciated?

Also does anyone LOs have gaviscon as well as domperidone? I thought I read you couldn't have two together but gp has prescribed both. Haven't started on gaviscon yet and wasn't sure whether to bother!

Thanks

Feeding refusal if it continues daisyloulou might be either a sign that the reflux isn't under control or that cow's milk is an issue. My son started doing exactly as you describe and it was down to the cow's milk. His feeding picked up when he was prescribed a hydrolysed formula alongside Lansoprazole. Sorry, I keep going on about cow's milk, but I reckon it's at play in loads of cases of reflux.

Thanks Narmada. I keep bouncing back and forth between reflux meds not being strong enough and cmpi. Urgh it's all so frustrating! My gut tells me it's probably the former as she doesn't really have any cmpi symptoms..... I think I will give it a few more days and then go back to gp again. He is going to love me. We've got cranial osteopath on thurs in a desperate attempt to try a non-medicinal route. Will see how that goes first.

DS didn't really have any very obvious symptoms daisylulu - a bit of mucus in his poo, vomiting, and then the becoming more and more difficult to feed thing. That was about it - no real skin rash, no diarrhea, nothing that would make you think CMPI straight away.

Oh, and he had a permanently snuffly nose.

I have used this threat a lot for support, just wanted to add my experience.

All the reflux symptoms, totally unsupportive GP. Finally got a paed appointment (at 24 weeks old) and he diagnosed silent reflux and milk allergy. Because I gave up milk months ago 'just in case', we have been spared either a worse time, or perhaps an earlier diagnosis depending on how bad the reaction would have been. Thank goodness I insisted on ranitidine 8 weeks 10 weeks ago agaist the GP's wishes. Keep fighting until you get answers, one way or another - chances are you're not imagining it.

By the way, what is CMPI?

Thanks for the support.

Hi Mac CMPI = cows milk protein intolerance.
Up to 50% of silent reflux caused by it, so clever you cutting it out! Wish I had, had diagnosis/support earlier and was still breastfeeding, would be easier than watching DD struggle with hydrolysed formula and dealing with blinking bottles!
Good to have some more experience to draw from.

My BF counsellor suggested it when the reflux symptoms started at 7 weeks. The paed said she was a genius !

Hi ladies.

Things not great with J . Despite ranitidine now being at max dosage (1ml 3 times a day, weight 5.6kilo) j is still fussing and crying on bottle. Most feeds feel like a battle and I'm at wits end.

We have gp appointment tomo - I'm going to insist on referral to gastric paediatrician and also for her to be put on Losec.

Quick q - for those of you prescribed Losec did you continue simultaneously for a while on ranitidine? And if so how long for? I'm worried all hell might break loose if we do straight swap and losec takes a while to kick in.

Also when should I start insisting on change in milk formula to rule out cmpi? I'm worried that if I change too many variables at the same time I won't know what's working.

Thanks

daisylulu sorry you're having a rough time. I would ask to try the milk first, I think - at least you can try that while you wait for the referral if the GP's not willing to try anything else like omeprazole. GPs can prescribe formula while you wait to see the paed.

Reflux and CMPI are pretty much indistinguishable symptom-wise, so it's as well to rule out something easily fixable like CMPI first. Don't agree to being prescribed soy milk - it's likely to be no good as many babies who are allergic to milk are also allergic to soy. Lactose free also no good as that's just missing the lactose. You want something like Pepti 1 or nutramigen. Former is far more palatable than the latter IMHO and so less likely to have problems with getting your babe to drink it!

For ease of administration, on the drug side of things, I would ask for lansoprazole oro-dispersible tablets - they are so much easier to give than Losec MUPS IMHO.

Thanks narmada

Well gp prescribed losec mups. (10mg).

I asked for different milk but he wants to see how losec goes, review on thurs and then change milk with paed input on thurs. I finally feel like we are getting somewhere.

Administered losec how yoga described in earlier thread (thanks!). Wasn't too bad.unfortunately j just had first projectile vomit in 3 weeks.BUT she drank the milk fine?! Most odd.

My gut says cmpi and hopefully on thurs we can get milk changed.

Will keep you all posted with how we get on.

Hello ladies, I have not posted in a while as all has been well in our little world and I have been taking advantage and enjoying my happy, smiley DD.
We have been on Cow & Gate pepti junior for 1 week and 1 day now and I have a different baby!
We persevered and didn't flavour it and she is now drinking 5 - 6 oz at a time with no issue (& very quickly too!! Feeding used to take up to an hour or so!) I feel like I have been liberated!
Next thing is to start cutting done the Losec to make sure it is the formula, going to give new milk another few days and then go to 5mg.
Daisy I kept using the ranitidine for about 3 days while the Losec kicked in, you will know when that is, my LO got very relaxed and sleepy.
Let us know how things go. I'm off to deposit my sleeping LO in her crib and have a small glass of !!

yoga that is such great news am really happy for you both and it fills me with hope that J may too be happy and sorted with a change of formula.

May I ask how you (or gp) decided on cow and gate pepti rather than nutrigamen? Did you mention in a previous thread that there is an aptamil pepti ? (sorry may be imagining that!). J is on normal aptamil at mo so may make sense for her to stick with a variation of that if poss.... Thanks

Daisy my GP decided on it, as Narmada mentioned it is more palatable than entirely elemental ones.
C&G and Aptamil are same company (I think) so apparently formulas are the same, however, there is an Aptamil pepti.
It really is amazing the difference, she is like one of those babbling smiley babies you imagine you are going to get!
Good luck.

yoga congrats!

hi everyone, my dd is almost 4 weeks now and doc/hv think she has reflux - she is showing all the signs. just wondering if switching her to formula rather then breast feeding would help? shes feeding so regularly its so tiring, and only sleeping for really short bursts, so im knackered! have been trying to get the gaviscon down her mixed with water but very difficult at the end of a feed and she just hates it. really want a happy settled baby, would formula be the answer????

dinks sorry about the issues your little one is having. Formula is very very unlikely to be the answer - it can make reflux worse in fact. It's harder to digest, hangs around longer in the stomach (more opportunity to reflux therefore), and is usually drunk in larger quantities than breastmilk. Also, the action of bottlefeeding does not stimulate the gut to move food through in the same way as the action of breastfeeding does. Can I ask a few questions? Might make our advice on here a bit more useful to you!!:

What are the symptoms which make the docs/ HV think reflux?

How's her weight gain? How often's she feeding?

Have you ruled out oversupply issues as the cause? This can make babies vomity and fussy and can be remedied by block feeding (think this if your DD has predominantly green nappies, is absolutely stacking on weight, and feeds frequently but very quickly).

Do you think she could have an issue with cow's milk? Proteins consumed by the mother can pass into breastmilk and cause upset in the baby. If she's got anything like eczema, mucus in her poo, or a red rash around her bum that's not nappy-related, then this could be an issue.

Has your DD been checked for a tongue tie? This can cause air swallowing, vomiting, trouble feeding, poor weight gain, etc. Easy to remedy if it's present.

Given you're breastfeeding, I think the best thing you can do at this stage is to contact a qualified lactation consultant (LCs )who'll come and talk through things with you. This website has a list of practising LCs - some charge, some work for the NHS.

Hope things get easier for you soon, and if you're sure it's reflux and the gaviscon's not working, do go back to the doctors as there are other medicines that can be given - e.g., ranitidine, acid-blockers like Omeprazole. Re. administering gaviscon, have you tried using the syringe from the baby neurofen bottle? It's got a bigger-than-normal hole so won't clog, and you can squirt it into your baby's cheek after a feed.