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.

Well, fruit juice dissolved Losec @ 10mg seems to be working for now! The GP got in touch with the hospital and has come back to say that I can give Losec in apple puree or juice depending on what works best. Even though she is only 9 weeks (10 on Sunday!)
The Neurofen syringe works a treat for ensuring tablet has dissolved and that none is lost in the administering process.
Just had our 12 midnight feed, so 1/2 hr upright is being timed and then hopefully lots of sleep!

Thats great,i found the puree a fiddle and some of the grains remain stuck to the bowl and spoon.Im going to switch to some juice next week as she is nopw 20 wks so will be soon thinking about weaning. Losec is really fab its given me my baby back.

ledkr I know what you mean, I can't believe the change in my LO, she even has baby pink cheeks now! Before she was a kinda green/grey colour and really pale. She even slept like a newish born yesterday and so far today.

Hi I am looking for some advice for a friend.

Her DS, 6 weeks has continually been sick after his feeds, not just once but usually 3-4 times and upto an hour after she has fed him. She started off bfing but he was sick and feeding very often so she moved onto babymilk. She has tried several different types and he seems fine the first few bottles then he starts being sick. He is uncomfortable inbetween feeds and always has his knees drawn up. He is now on lactose free milk but yet again he is being sick. ATM he takes 5 oz but brings back maybe 2-3 over the next hour or so. He also has green poos which I thought was due to being hungry, which he could be considering all he sicks up.
I reccommended feeding him upright and keeping him upright for as long as she can after a feed but aside from that I'm not sure what to suggest.

Thanks

Debs your poor friend, sounds awful.

Is the vomiting getting worse? Is it ever projectile and forceful?? Actually, regardless of the answer to this, I think with a baby so young she should probably take him to the GP to get their opinion. There's one thing in particular - pyloric stenosis - that can cause forceful vomiting in young babies, particularly boys I think, that should probably be checked for. having said that it's very probably not and I wouldn't want to panic her. Just maybe gently persuade her to see a GP..?

How come he's on lactose free milk? Has a GP prescribed that? Not many babies have a true lactose intolerance as breastmilk is packed full of it. However, lots of babies DO have a problem with cow's milk protein and this could be the problem with your friends son. It can cause vomiting and other digestive troubles (either constipation or diarrhea, ferocious wind, skin rashes etc etc etc). Suspect this if it's become worse since he was on formula, although babies can still experience reactions when their breastfeeding mums consume dairy, even minute traces. Hypoallergenic milks are available on prescription but sometimes have to be wrung out of GPs because they are expensive. Soy milk formula and goats' formula aren't suitable alternatives (even though many GPs suggest Soy) because soy has high levels of oestrogen-like compounds in it and soy is also often an allergen for those who are allergic to cow's milk.

Or, it could be reflux, which can be due to lots of things but is basically the result of an immature digestive system. If the baby is gaining weight and (crucial, this bit) happy along with the vomiting, then often no treatment is given. However, if the baby's obviously seriously uncomfy, then it's off down the road of gaviscon-ranitidine-omeprazole I'm afraid.

Has the baby been checked for a tongue tie? This can cause feeding issues, air swallowing, poor breastfeeding, etc.

dd was prescribed losec yesterday by consultant. had a nightmare giving it this morning. so glad to read its not just me!!!! am i right in thinking losec comes in liquid but is not as effective and does mixing it with say apple juice make the blinking balls dissolve? if so can i give a 6 week old baby 10-20 ml of baby juice to help dissolve the tablet and get dd is actually swallow the bloody thing.

Hi Tayto my DD is 10 weeks now, so not sure about 6 weeks but have it on the authority of the cardiac paediatrician and the paediatric pharmacist in the hospital and my GP that we can use a little baby apple juice. I use the 4 months+ from Boots. She LOVES it.
As mentioned in this post, get Neurofen medicine for babies, take out the syringe, sterilise it, pop the tablet into the syringe and pull up 1/2 syringe of apple juice, leave on side for tablet to dissolve, takes about 5 mins and hey presto, squirt gently into babies cheek. Suck up a little more to flush and you are done.
I pop my LO in her bouncy seat for a little distraction and put a muslin cloth over her baby grow.
Good luck. I seriously found it impossible before this.

Hi ladies, can I join you? DS3 is 5 months. He is on gaviscon, ranitidine and domperidone which have nearly stopped the pain but he still pukes a lot. He is failure to thrive and only weighs 10lb 1oz. He also has hypotonia and development delays. We are going into hospital next week for a ph study. Does anyone know what it's like? I'm dreading being in hospital away from my older two boys and dreading the massive pile of laundry I will come back to.

elliejjtiny sorry about your DS, it's so stressful. Have they never talked about putting him on something stronger than ranitidine ? If he is FTT then surely they should have trialled him on a PPI drug like omeprazole or lansoprazole? Ranitidine, even if weight adjusted, loses its effectiveness after a while I think. Is it a case of him taking in insufficient calories because of pain/ feeding aversion, or because he is vomiting most of it back up, or both? Have you tried carobel as a thickener instead of gaviscon? It's less constipating and if necessary you can make it really quite thick, far thicker than gaviscon makes it IIRC, although I'm not sure if this is advised by those that know best .

Sorry no experience of PH study, but strangely our DS also had trunkal hypotonia and moderate head lag, and had a battery of tests for it, chromosome studies, MRI scans, the works. Nothing was found. It was very stressful at the time but he is fine now, 7 months old and his hypotonia seems to have really improved - he can even stand holding on which frankly is amazing.

Hope your hospital visit goes OK. You can always come back here for support, don't feel you're on your own.

Hi Ellie sorry to hear of your LO's situation. As Narmada says, this thread is very supportive and has really helped me through some low spots, it's a good place to vent or get some advice. I found taking time to read through all the posts helped me to understand the situation a little better and feel less alone.
Good luck with the hospital and keep us up to date.

Thanks ladies. We tried omperazole but he spat it out every time and he was producing a constant stream of puke. He lost so much weight the paed changed him back to ranitidine. Can you give carobel when breastfeeding? We're mix feeding at the moment, half bf and half infatrini which is a high calorie formula. The FTT is partly due to vomiting and partly because he is using up extra calories with the hypotonia. DS2 (aged 3) has hypotonia as well but his is mostly in his legs. He was sitting at 16 months and walking at 2y 10m. DS3 seems to have his hypotonia mostly in his trunk and less severe than DS2 although the FTT is worse because he has reflux as well which DS2 never had.

I didn't realise the hypotonia made them use up extra calories - you could really do without that, couldn't you?

You could ask the paed to try lansoprazole oro-dispersible tablets as opposed to the ranitidine or omeprazole (which are horrible, difficult to administer and taste bitter). Lansoprazole tabs taste of strawberry and can actually just be broken into little pieces and put directly onto the tongue to dissolve if you're confident your baby won't get said bits stuck in their throat. Using that method it's quite hard to spit it out, as it kind of sticks to the tongue then gets washed down with saliva.

You can use carobel when BF, yes - you make it up into a paste and feed by spoon although TBH I never did find that the 'take seperately to main feed' method worked too well with either gaviscon or carobel - it only really worked for us when pre-mixed in a bottle.

Has cow's milk protein allergy been ruled out?

Another thing to ask the paed is whether there may be an element of gastroparesis (delayed gastric emptying) going on - this is often present with reflux and means the contents of the stomach sit around for longer. If it is present, then you are doing the best thing by continuing to BF, as BF helps gastric emptying. There are other medications that can be used aside fromt he standard acid blockers where DGE is a factor - for example, erythromycin can be used for its side-effect, which is increasing the speed at which food moves through the digestive system.

Hi all

Please can I join this thread too? I'm mum to little Conor who is 16 wks old but corrected age of 8 weeks as he was prem. He's been an unhappy little bunny for the past six or so weeks (though has always had problems with digestion as had NEC in hospital which was thankfully caught early). I've gone through all the usual gubbins, Infacol, Colief, Infant Gaviscon and finally concluded that his problems must be reflux.

He's not a big vomiter, just wet burps really, but he's so hard to feed. He starts crying as soon as he gets the first mouthful or two down and then I spend the next 45 mins or so trying to calm him down and then feed again. Sometimes I can get around 100mls down him (he's just under 10lbs) othertimes it's only around 70mls - but it's always a struggle.

He just doesn't seem like he's a happy baby, which makes me feel terrible. He hasn't really smiled properly yet and most of the time he's frowning or screaming. He sleeps a lot and we don't have issues with him not sleeping at night. He goes down fine and wakes up a couple of times during the night for feeds, nighttime is much easier, in fact, as I guess he's more relaxed. He wants to be held all the time during the day and there isn't really much time when he's awake and happy. I am finding it quite heartbreaking at the moment.

I went to the docs and asked if we could have omeprazole prescribed. That seems to be the drug that everyone says is most effective. I didn't realise at the time but he was prescribed the liquid. It took two days to get it so he's had the first dose this afternoon. It went down ok and he wasn't sick so I'm hoping it will help. Does anyone know if the tablets are MUCH better than the liquid? I've heard the liquid isn't great but though I'd at least give it a shot.

elliejjtiny I hope your LO starts to improve. I think with the PH study they have a gastro-tube in for 24 hours. If that's the case it's not painful at all, all the babies in the neo-natal had them and it didn't bother them at all. Sorry, I don't know much but am sure others will know more.

I haven't read all this thread but even what I have read has been so helpful.

Hi Joe, hopefully things are looking up for you. We were on tablets for 3 days and LO improved 100 fold by the 3rd day, was very relaxed, happy, sleepy and smiley (didn't sleep before.) They were very hard to administer so we got the liquid. After 3 days on the liquid she had gone back downhill. I persevered for a week and then went back to tablets, took another 3 days and she was back to relaxed girl again.
I would recommend the tablets. If you read my post to Tayto above you will see how I now give the tablets, thanks to Ledkr for the method.

Thanks Yogamummy. I have another question (so many!) if I've been prescribed 3mls of the omeprazole and the tablets are 10mgs how would I be able to measure that out? The liquid went down ok yesterday but today he spat loads of it out so I've no idea whether he had enough anyway. Urgh it's all such a challenge. And he's got an upset tummy, lots of nappies and big vomit this morning, which seems to mean that he's not that hungry. I ended up in A&E last night as I was so worried about him but he's not ill so it must all be reflux related.

Hi Joe just break the tablet in half and work the same way, by the time you loose a bit you will prob be at 3mg. I think it says on crying over split milk (the NZ reflux website) not to worry about too much with this small amount. My LO was on 5mg as a starting dose at 8 weeks but had to go up to 10mg.
Sorry, just read your post again - did you mean 3mg or 3mls of liquid? As 3mls of liquid could be more than 5mg of active ingredient depending on the strength of suspension. I think my LO was on 2.5mls which was 5mg of active ingredient. IYSWIM?!
If this is the case then 1/2 tablet more than fine, hope that all makes sense.

ps. Joe sorry to hear about the distress and hospital visit. We have been there with the reflux too! At 3am everything seems so much worse!

Hi Veterans, some advice needed. My LO seems to be having a few issues with wind/poo. She only poos once a day and sometimes not at all. She has not pooed today and has been screaming crying when farting. She is on C&G comfort at the moment as has been for nearly 2 weeks. This is meant to be good for colic/constipation. Do I need another drug to get her tummy moving or a formula change or something else?
Thanks for advice, just don't know how often she should poo also the pain seems totally disproportionate to what it should be.

Forgot to mention her poo was a little solid yesterday.

Yoga, don't think it matters how often she poos unless she's in discomfort...hmm, omeprazole can sometimes cause constipation. A little fruit juice/ fruit puree?? An oz of water to loosen things up?

Cow's milk protein issues can definitely cause constipation and wind. DS had both of these on normal and comfort formula. Gone completely on the hydrolysed.

Bugger, don't know if I should ask GP for prescription for hydrolysed and persevere with it for a few weeks to see of it makes a diff. The paediatrician said he didn't think she had an issue with cows milk as all symptoms were present when BFing and so did not think it was necessary to prescribe hydrolysed formula.
Apart from the pooing and a little cradle cap/dry skin on both eyebrows not sure there are signs of intolerance. How do you know?

You don't think she needs the motillium drug to get stomach emptying or does this not have an effect on poo?

DS had no real symptoms apart from vomiting, constipation and awful wind. He also had mucus in his poo, a tell-tale sign apparently. Oh, and feed refusal. His skin was perfect, no rashes etc.

DS also had symptoms when exclusively BF. Cows milk protein can be present in human breastmilk if the mother consumes it so consultant not necessarily correct on that one.

It'll take a good couple of weeks for hydrolysed to take full effect. I would give it a try if she is still suffering from symptoms despite omperazole at a good dose.

Bad day today! She only slept for 1/2 hr from 7.30 am until 8pm. She has been in bits all day, would not settle unless being held. I tried her on HIPP organic at her 4am feed and all day today, not sure if this is why or it's because I have not been letting her sleep on me today(just couldn't today with work men etc).
She has had several good poos today, which she doesn't normally on the C&G comfort, its generally only one, if that. Also I have not noticed too much in the way of wind problems today.
What do you think ladies? Do I have a LO with cows milk intolerance issues or perhaps the 10mg of Losec is not enough, she weighs approx 15lbs now.
It is very settled when she goes on new meds and then things just seem to
going downhill again.

Yoga, fraid to say that the only way to rule out cow's milk issues is to try no cow's milk for a bit :(. But if it works, then you will in all likelihood have a new baby.

Thanks Narmada I guess I will just have to try and persuade the Doc and get prescription. I'm sure he will oblige a 2 or 3 week trial as he isn't having to spend the budget on the Losec liquid now!