experts on refluxy babies please

[bethylou]

DS2,aged 12 weeks, has reflux. DS1 had it (though of the silent variety) and I thought I would know most of the answers this time round, but I don't!

The sickness is irritating, but more worryingly DS2 retches repeatedly after feeds and struggles to breathe during these episodes (so I don't dare leave him with anyone except DH).

He is on ranitidine but it is not the wonder drug that it was for DS1. DS2 is now struggling to feed from me due to discomfort (which causes 10 mins of feeding to take an hour to complete - not easy with DS1 around) He won't take a bottle so I can't just give up breast feeding but I am sitting here weepy, weary and very frustrated. I have a sympathetic GP who I will see again tomorrow but I don't know what to ask him really. Omeprazole maybe? (DH takes this - it's a fmaily issue!)

DS2 also wakes at approx 4 or 5a.m with terrible bottom wind which takes him about half an hour to an hour to shift. I'm sure this is linked to being difficult to wind after feeds but if anyone has any suggestions on this front I'd be really grateful too. He doesn't feed in the night now so it's frustrating to have to be up for winding!

It's been a bad day today and I'd be grateful of any advice/experiences as I'd currently try anything. Have already seen a chiropractor and this has helped a bit. Thanks in advance.

Definitely try omeprazole.

Both my refluxy DDs have been, and still are horrendously windy. I've just had to bath DD2 at 9:45p.m. to try to ease the pain and get her to sleep (7p.m. bedtime). Sorry, no answer there. Let me know if you find a solution. Being woken for hunger is fair enough, but farting feels like a cheat.

Thanks. I want to encourage some mdeics to do some research on it as I think it is a hugely underdiagnosed problem and also not recognised for the disaster that it can be. I know they grow out of it (well, mostly - DS1 is still on a tiny dose of ranitidine now at 2.1yrs), but it's not easy when you are in the middle of it. Hope your DD sleeps for you.

oops - too tired to spell! medics was what I was trying to type!!

If you are bf, have you considered stopping dairy yourself for a couple of weeks and seeing if it makes any difference? A pain i know but it can really help.

DD1 had severe reflux and wind and it was made significantly worse by dairy. She refused to bf past 7 weeks (as she would puke it up and scream) but ended up on dairy free formula for 3yrs. She has now outgrown the intolerance. None of the drugs worked for her - just the dairy free and thickener (not much use for bf though).

My sympathies as i know how distressing it is. I would really try the dairy free option for you for a couple of weeks. We saw a paediatric gastrolenterologist privately in desperation and his opinion was that the majority of reflux cases were dairy intolerance (which is usually outgrown)

hth

I second omeprazole and going dairy free. probably best not do both at the same time as then you will not know what has worked.
my DS needed both and his reflux was horrendous and scary. he screamed pretty much non stop the first 4 months of his life. we also had the stopping breathing episodes and every feed was a nightmare. anyway, once on omeprazole he improved a lot but it also turned out he had cow milk protein intolerance so we ended up on nutramigen when he was about 5 months old.
I am very, very happy to say that he grew out of it and has been off omeprazole since 8 months old.

good luck to you, reflux is hell.
let us know how you get on with your GP.

Lots of sympathy here.

My three all had reflux, DC2 and DC3 in particular had dreadful discomfort and misery.

I got one piece of advice from a cranial osteopath with DC3, which was the single most useful thing that anyone ever said. She told me to always feed him with him lying on his left side, as apparently the top of the stomach loops round to the left or something, so if you feed them on their right side then the milk is flowing back out at the same time as it's going in - hence very uncomfortable.

It means you have to be a bit athletic when feeding from the left breast. But it did make such a difference for us, it really really helped. That and carrying him in a sling for half an hour after every feed.

Maybe your case is more serious than ours, I'm not sure, but thought I'd mention it anyway as it's a simple drug-free thing you can try. Fingers crossed it helps you too.

God, the night-time bottom wind too. How well I remember that. No handy hints there I'm afraid.

go here:
www.cryingoverspiltmilk.co.nz/ and you'll find out about treatment and tips.

my DS2 had terrible reflux with episodes of apnea. He was on lanzoprazol (lansox) similar to omeprazol (losec) .

I went on a dairy-free diet, and the gp said to avoid tea, coffee and chocolate, but it is hard to stay away from coffee when you don't sleep at nights!!

It may get worse with weaning before getting better around 8-10 months. At that time we were able to discover through blood testing that he had allergy to dairy, eggs and wheat.

Thanks all for your support/experiences and suggestions. Will look at the website mentioned and have been trying to feed on his left side as it has been obvious with both boys that they have been better feeding on their left side (though not terribly compatible with feeding in public with a long baby! Mind you, there's no way I can feed in public at the moment anyway).

The GP was great as usual and has a) referred DS to the hospital and b) prescribed Omeprazol (though it won't be in stock till tomorrow). Will try that first and then have a go at the dairy-free as will try anything at the mo. Today has been a lot better but he is still screaming/burping/puking now on and off after a 6:30p.m feed . I've also purchased a respisense monitor for night times so that I will hear an alarm if he stops breathing. This at least enables me to sleep a bit more peacefully.

bethylou, I hope omeprazole works for you. It certainly was a life saviour for us.
We also have a breathing monitor and it helps me sleep better at night.

the cryingoverthespiltmilk website is a mine of information, absolutely brilliant.

(oh, and mumsnet is even more brilliant - my DS got diagnosed thanks to mumsnetters, HCP would not listen to me for a long time as he was gaining weight alright.)

correct. Typical answer: he is gaining weight so he is fine. False. false.False. Weight is not a key for diagnosis..
My son had also what I called the acid poos, that smelled soooooo bad, I had to change the sheets as well.
We started with 2/3 of lansox pill in the morning but we increased till 2/3 in the morning and 2/3 in the evening.
And it made a big difference (sadly not a miracle)

My dd has reflux and terrible wind. She has since been diagnosed as lactose intolerance, so agree with the dairy connection.

I presume you are keeping your ds propped up after feeds? I found this really helped. I also put telephone directories under the legs of one end of her moses basket.

For the wind, if you gently push his bent knees up towrd his chest this may help. Also, gently rub his tummy in a clockwise direction. Some Surestart centres run baby massage courses which may help, even if it just relaxes him.

I breast fed dd and found that winding her every few minutes sometimes helped.

I really sympathise, my 18 month old has reflux. The first 6 months were horrific and involved several trips to hospital, constant choking, stopping breathing, constant screaming, excess wind, violent stomach noises and hiccups. He screamed all the time he was awake and was up, literally, all night long. I have never known exhaustion like it.

We tried dairy free (no change) and he is on Domperidone and Omeprazole which helped about 50%. We found a hammock bed and breathing monitor really helpful.

He still has reflux at 18 months (most grow out of much earlier) but he sleeps OK now and is more manegable (although still having eating issues) and we breastfed till 11 months.

I hope things improve soon.

My 10 week old DD seems to have reflux.
The doctor has given us Infant Gaviscon, but as she's breastfed (usually lying down - I will try the left-side only thing from now on), we have to give it by spoon/syringe and she always vomits it straight back up.
She hates taking any medicine orally. She retches if she even thinks she's going to be given something.
I'd like some advice on whether I need to press for some more checks.
She is gaining weight, but very slowly, compared to when she was younger. She is also dropping down the percentiles.
She seems to find feeding very difficult, lots of gagging and choking. She moansand writhes afterwards. I've tried expressing off some milk to reduce flow initially in case it was just oversupply.
She does swallow wind, but if I break off too often to burp her, she loses interest in feeding.
Propping her up afterwards or carrying her around does not seem to make much difference.
She also has problems with a windy bottom at night and in the morning.
She often has a dipped fontanelle.
The doctor does not seem worried about any of this. I have been advised not to do an informal elimination diet (ie not to exclude dairy).
When she's not in the post-feed throes of unhappiness, she's a happy and gurgly little baby.
Any thoughts from those in the know?

And how do you go about seeing a private consultant/getting private allergy checks?
Thanks

gordonpym, what is the difference between lansox and losec? Have you tried both? I'm considering taking dd back to the gp as I think she still has significant reflux pain and the wind is worse than ever.

No big difference, they are all Proton Pump Inhibitors. The family is even bigger; you have esomeprazole, pantoprazole, ... Omeprazole (losec) was the first one, and the others were created later. But there is no big difference on a chemical matter. It appears the difference may be dose dependent and not proton pump inhibitor specific. Lansox is easier to give to small babies, as it dissolves very well in a spoon with 2ml of water.
We only tried lansox, and we had to increase several time the dosage until we found the right one.
How old is your DD?

She is 5.5 months on a 1mg/kg dose at the moment (ish- cutting tablets isn't an exact science, nor is mopping up the granules that don't quite make it in!)

My daughter (now 2.5 years) had reflux

she had ranitidine
also colief
also gaviscon

did the trick - if rantidine is not working ask for a referral to a paediatrician - maybe its not reflux ?

I didin't cut the tablet. I dissolved it all in 3ml of water and gave only 2 ml to DS2 (when we were on a 2/3 tablet). I know it's a waste, but that's what we were told to do.
I am not familiar with losec, but it seems to be quite a low dose according to www.cryingoverspiltmilk.co.nz/MedicalTreatment/MedicationwithDosages.htm

Ames I'd say that the symptoms sound very familiar to me and that the GP's response is also very common. I specifically made an appointment withe the one at our practice that is open to dialogue as I know one of them would have sent me away empty handed.
Gaviscon is always the drug the GPs semm to start with but is specifically for supressing vomiting. As this has not been the major issue for my two DSs, it hasn't really helped us (and made both constipated). The ranitidine tastes considerably worse - a very strong minty taste - and DS2 pulls awful faces after it. DS1, on the other hand, has never batted an eyelid!
I believe that you can ask your GP for a referral to the place of your choice if you want to go privately, but I'd go back and request ranitidine first from the GP. The tests seem quite invasive for a condition that frequently rights itself (the website mentioned above is great and suggests that 90% grow out of it by age 1). I'm keen to avoid the investigations if we can and just want to treat the symptoms for the time being. Come back to us here and keep badgering the GP. It's a very difficult thing for other people to understand if they ave not experienced it. You're not alone here. Be kind to yourself and realise that it is nothing that you are doing wrong (took me a long time to realise this).

Please excuse the typos - as I'm sure we all are, I'm very tired.

My DS is on 20 mg Losec but was on 10mg when younger. We had liquid (tastes foul) and then capsules when he was 5 months that you can sprinkle in apple purree (you can do that with the Losec MUPS too). The liquid costs over £100 a bottle so unless you ask they never offer it. They tried fobbing us off with tablets etc at first.

There is the generic for Losec now which is a lot cheaper and as effective as the brand one

is it the tablet though as Losec is far easier to give a baby so they often give the branded.

Can anyone tell me how long it took to see any changes with Omeprazole? Today DS2 seems worse than he was on ranitidine yesterday. It could be a long weekend!

I'm supposed to go to a toddler group tomorrow a.m with both DS and I just don't know if we can go as feeding in public at the moment is not a nice experience (especially if I'm supposed to stop DS1 from hammering other children while I'm feeding !)