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Infant long for meds to work? (Domperidone and Omeprazole)

(36 Posts)
jellybeans Fri 26-Dec-08 23:10:31

Hi 6 week old DS has silent reflux and the last few weeks have been horrendous. He has constant fluid coming up after feeds, violent hiccups, sick, and worst is gagging and choking, sometimes a couple hours after, have been to A and E twice he choked so bad, diagnosed with GORD. Tried gaviscon which didn't work, just made his poo bad. He started on the above meds 4 days ago but no sign of better days yet, could it take time? DS does not sleep AT ALL at night and we are exhaussted and desperate for DS to be happy, he is so miserable all the time poor thing. I am breastfeeding and often dread feeds as i feel guilty as i know whats coming and feel responsible

AbricotsSecs Fri 26-Dec-08 23:14:30

Have you tried going strictly dairy free? Please please please try it! It was a miraculous cure for my ds2's reflux symptoms - no doctor recommended it, just prescribed Infant Gaviscon and ranitidine hmm but I was able to chuck the drugs away after just a few days - worth a try!

TWezTheNightBeforeChristmas Fri 26-Dec-08 23:16:45

Omeprazole can take about 10 days to work

Poor DS you all have my sympathies.

hope you see an improvement soon

AbricotsSecs Fri 26-Dec-08 23:18:53

Ps I really wanted to say that I know what you are going through - honestly. Try oat or rice milk and pure sunflower spread for a few weeks. It takes a few weeks for the cow's milk proteins to clear first from your system then the baby's - but you have to be strict and read labels. As I say, for my son it was nothing short of miraculous and he went from inconsolable crying and obvious discomfort to a big bouncing happy boy in a under a week

TWezTheNightBeforeChristmas Fri 26-Dec-08 23:21:54

Little Refluxers is a great website/forum for parents of children suffering from reflux.

Offers lots of support and advice, I found it really useful when DS was little

jellybeans Fri 26-Dec-08 23:23:06

Hi i have thought about it and cut out cows milk already, but i wouln't know where to start as everything seems to have milk proteins in! Any good websites to try? could i have DS tested for intolerance?

mummypig Fri 26-Dec-08 23:48:39

hi I really know what you're going through as well. Ds2 had severe reflux and was on medications right up to his 2nd birthday. Give the meds a bit longer, you might have to wait up to 2 wks but they made a huge difference in our case.

Also agree about the cow's milk. It can be a huge pain reading labels, but if it makes your child better then it's going to improve your life no end. And if it doesn't help, two weeks avoiding milk isn't really so terrible for you to go through. If you can, make as much as possible from scratch at home. In my experience you really have to watch out for sliced meat, baked goods and ready made soups as they almost invariably contain milk in one form or another. So go 'back to basics' - roast a few joints of meat, cook veg with nothing added, make big batches of soup and bake your own bread for the fortnight. Substitute Pure margarine for butter (other margarines usually have some milk added), rice milk for cow's milk, eat rice cakes for a bit, have hoummous as a spread instead of soft cheese. I can't think of a specific website offhand but there should be lots of support and other suggestions on the mumsnet 'allergies' board.

Or it could be a different protein. The international Yahoo! group breastfeedingreflux has lots of helpful people on it and several have tried an exclusion diet with good results. I'm currently on one for ds3 who seems to react to oats and eggs. (Guess what my favourite breakfasts were prior to the exclusion diet?)

The NCT or LLL might be able to put you into contact with another mum who's been through it all too, and I've also used PAGER to do the same thing (just through e-mail, not phone, as their volunteers are based in the US). You can't underestimate the value of help from someone who really understands what you are going through. And take no notice of people who tell you to schedule feeds or leave a minimum length of time in between them. Refluxers do better on 'little and often' and I really had to rethink my approach to breastfeeding after having ds2.

Pollywogbaby is one of my favourite sites about infant reflux. I've not bought any of their products but the e-book is very helpful.

Thinking of you

AbricotsSecs Sat 27-Dec-08 00:04:58

Great post there from mummypig with lots of excellent advice. Agree the easiest way to try dairy free is to go 'back to basics' - I know with my ds even a speck of dairy in my diet after I had eliminated it used to affect him! Lots of 'meat and two veg' meals, no cheese, be careful with soya as dairy intolerant kids often go on to develop an intolerance to this too. Another tip is to look for thing (including chocolates wink) that are marked vegan or kosher parve. Sainsbury's has a great Free From section. Randomly, most brands of bourbon biscuits are dairy free!I'm sure it sounds daunting but I can honestly say it has become second nature now . Also, remember that they do generally grow out of it by at least the by end of toddler years!

Let me know if you want some recipes. Good luck!

mummypig Sat 27-Dec-08 00:11:59

Also, to answer your last question, apart from coeliac disease I am not aware of any reliable tests for food intolerance. RAST and skin prick tests look for classical allergic responses which are not present if it's just an intolerance. 'Alternative' approaches like kinesiology just don't have evidence to back them up and the danger is that you would end up avoiding loads of food and potentially have nutritional deficiencies, for no good reason. Even tests which appear scientific e.g. YorkTest and ELISA which look for IgG are not based on good scientific research so please don't shell out money on them.

The best approach is just to cut out the food in question for a while, see if there is an improvement, and then see if the symptoms return after reintroducing the food. What makes it difficult is, as you've already noticed, the prevalence of cow's milk added in one form or another to many shop-bought foods.

Ideally you would do this with help from a good dietitian, but I haven't found any help from the NHS dietitians so far, and haven't been inclined to look for a private one. If you end up cutting out cow's milk for a long time you will probably want to watch out for calcium intake and I found the Vegan Society website had information on various non-animal sources of calcium.

Sorry for the huge posts but I hope they help. As you can tell this area is close to my heart!

AbricotsSecs Sat 27-Dec-08 00:12:49

Also - there is no test for intolerance especially in young babies, diagnosis is made on symptoms iyswim. My dd had hospital pinprick testing at nine months but that is because she is severely intolerant to a whole host of food proteins (so her twin brother got off lightly with' just' the dairy problems hmm). Don't ask about my exclusion diet as 'hardcore' doesn't cover it (but dd is a relatively rare case to have such multiple intolerances).

Sorry for waffling! I'm coming out the other end now ax they are nearly 16 months so I won't be feeding them forever...

AbricotsSecs Sat 27-Dec-08 00:14:52

X posted mummypig - also close to my heart, you can tell we both have the t-shirts!

AbricotsSecs Sat 27-Dec-08 00:17:50

Just to say - the NHS dietician I see at the hospital for dd is actually quite sweet (but couldn't tell me anything I hadn't already worked out from my own reading up on the subject!)

beagle101 Sat 27-Dec-08 00:30:12

Just to echo Hoochie and Mummypig - ds suffered terribly from reflux until he was 18 months - it was a nightmare all round so huge sympathy coming your way, it is a very difficult time. I was able to ditch the drugs and just use the occassional infant gaviscon after getting all the dairy out of my system - it made a huge difference (ds is now just 2 and bizarrely would drink a milk lake if you let him - so I am guessing it was not so much a milk allergy but an inteolerance that he can now cope with or something) but like the others I can say cutting out dairy made a big difference.

On a practical point (and I am sure you are probably doing this already) but slightly elevate head end of bed (we also additonally added on of those fitted triangle wedges to raise him up a bit more and it seemed to help) and I know you are breastfeeding but if you are expressing you might want to try one of those haberman medela feeders. They were designed for babies with cleft palette (sp?) but they work like breastfeeding and I found with ds they led to far less reflux than even breastfeeding so I used them mixed in with bf. They cost about £17 for one bottle which is enough to make you weep but certainly for us it made a HUGE HUGE difference and we use them to this day (ds still has a bedtime bottle!).

Good luck - it will get better but I think it just takes time and finding the right combination for you.

nappyaddict Sat 27-Dec-08 00:42:38

Make sure you get him weighed every week and dosage adjusted accordingly. The dosage depends on weight and won't work properly if he isn't having the right dosage.

jellybeans Sat 27-Dec-08 09:12:36

Thanks so much everyone Am going to try going dairy free. Does anyone know if I can have soya milk instead of normal milk?

Will also get DS weighed weekly. Anyone know Do I note his weight gain with my GP or the prescribing hospital?

Also any ideas to get DS to take the Omeprozole (disolvable) withour screaming, it is yukky by the look of it. The Domperidone seems to taste OK. He is getting bad wind not sure if related to the med.
Thanks again.

AbricotsSecs Sat 27-Dec-08 10:55:47

The wind could very well be related to dairy intolerance (if this is indeed the problem).

Soya not ideal as the proteins are apparently very similar to those in milk so often cause similar problems. Try rice milk (brands like Provamel, Rice Dream or Rice & Easy available in supermarkets) or oat milk (like Oatly). They all taste different and some are fortified with vitamins and calcium or flavourings like vanilla, hazelnut or chocolate.

jellybeans Sat 27-Dec-08 14:25:14

Thanks, will get some rice milk and study what I can eat! Are there any other signs of dairy intolerance in babies?

jellybeans Sat 27-Dec-08 21:59:49

So stressed and worried, scared he will choke at any time and that he is really unhappy, I feel such a failure seeing him miserable, is this normal?

AbricotsSecs Sat 27-Dec-08 23:08:19

Oh you poor poor thing . It's awful seeing them suffer. You are taking steps to help your ds though. Please stay positive. I sincerely promise you I have been there, so I really do feel for you. I'm keeping everything crossed for you that either the meds or the dairy free or a combination of both help. For my ds the meds didn't really touch it. I was so worried. I went to a cranial osteopath and all sorts (bed at an angle, feeding in weird positions, odd winding techniques) before 'fixing' the problem by simply going dairy free.

Please, keep posting. Mumsnet is brilliant for support. You are doing the best you can to help your baby and things will get better. ...'Cause I said so. wink

bigbaubles Sun 28-Dec-08 13:15:13

This may be an obvious point but did the Dr tell you not to give Domperidone and Omeprazole within an hour of each other? Domperidone works by speeding up the rate at which the gut works, if you give the Omeprazole while the stomach is running at full pelt he will not get the full benefit of it. Domperidone works best 20-30 minutes before a feed and can take a few days to kick in properly. I do hope you both get some relief soon.

jellybeans Sun 28-Dec-08 13:33:06

Hi no the doctor didn't tell me that, the doses both say 9am (with a further 2 for Domperidone) so we have been giving together. I think the Omeprozole says 30 min beore a feed also. Any idea how to best give it then? Thanks.

bigbaubles Sun 28-Dec-08 14:01:01

I personally would give Omeprazole first, give it 10 mins or so to get into his system then the Domperidone 20mins before the feed. Omeprazole does not affect the absorption of domperidone but domperidone does affect omeprazole - it affects asborption of anything in fact hence the warnings on Calpol etc.
Omeprazole is also available in suspension form by the way, Drs don't advertise it as expensive but it's easier to take than the revolting dissolvable stuff.

BB (not a Dr but a seasoned reflux parent of 10yrs. You can imagine the state of my carpet!)

jellybeans Sun 28-Dec-08 14:51:42

Thanks so much BB will try that from tomorrow and ask about the suspension. Poor DS hates the disolvable stuff, looks gross. Thanks again.

nappyaddict Sun 28-Dec-08 23:26:53

I used to give Domperidone 30 mins before a feed and omeprazole 1 hour after I had given Domperidone. Is that not the correct way to do it?

AbricotsSecs Sun 28-Dec-08 23:56:39

How is the dairy free going, jb?

bigbaubles Mon 29-Dec-08 09:27:03

Nappyaddict - not sure any way is correct as such. I think it rather depends on the child. If reflux is only a problem an hour or so after a feed, then domperidone before the feed and Omeprazole an hour later is possible. My youngest DS suffers from reflux the moment anything hits his stomach, so we have to get all meds in before we even start feeding. If I gave the O after a feed it would be vomited right back at me along with everything else!
Omeprazole works by lessening the acid production so when it works best will depend on when your child is producing the excess acid. Trial and error has been the only way to get it right in this house anyway.

nappyaddict Mon 29-Dec-08 16:07:16

Well doc said to use domperidone should be given 30 mins before feed an omeprazole had to be given more than an hour apart so we couldn't think of any other way around it.

jellybeans Mon 29-Dec-08 18:14:13

Thanks. Dairy free diet not happened strictly yet as haven't been shopping yet. Am having to study what can eat and then will send DH to shops!

mummypig Mon 29-Dec-08 21:39:06

Hi jellybeans I was away for the weekend but have typed up a list of milk-free soya free meals my ds used to eat (when old enough to eat lots of solid foods). This is to help a nanny of another cowsmilk and soya protein intolerant child but I can e-mail these to you if you are interested? Just send me a message using the 'contact another mumsnetter' link.

Docs often forget to tell you about the optimal time to give meds. I think it's because they think the extra info might stop you from giving them at all. Of course it's better to give some meds at the wrong time than not at all. But I found this site very interesting: It's based on research on omeprazole and other ppi drugs and how they are taken up and used by kids' bodies as opposed to adults': marcikids.

Although it's a long time ago now, I think I used to give ds2 his omeprazole half an hour before a feed (hard to predict for a breastfed babe though) and the domperidone just before a different feed. I also think I used to split the omeprazole dose so it was given three times a day, despite the doctors prescribing it for just twice a day. This was based on the info from the Marci kids site and of course it depends how confident you are to change what the doctor has prescribed. I agree with bigbaubles though that trial and error is often required to work out what is suitable for your child.

If you are weighing your baby weekly I would let the doctor at the hospital know if his weight increases by more than about 10%. Also do you know what weight your baby was when the medicine was first prescribed? If so, you can work out what dose the doctor has prescribed in mg/kg/day (which is what they start out with). Then it's fairly easy to see for yourself if the weight increase would lead to a different dosage. I haven't explained that very well but if you send me the figures I would be happy to do the calculations (ex OU tutor now sahm in need of a bit of academic diversion wink).

mummypig Mon 29-Dec-08 21:43:08

just to clarify, the dairy free meal ideas are for you not for your ds

and the 10% increase is from whenever the docs weighed him, e.g. if weighed at 4kg then let them know when he reaches 4.4kg as they should up the doses by then.

AbricotsSecs Mon 29-Dec-08 21:56:01

Mummypig, I would be very very grateful for your list as I'm often asked for df/sf meal ideas... My email is helen-b at talk21 dot com if you would be so kind [cheesy grin]

mummypig Wed 31-Dec-08 01:07:16

Done smile

jellybeans Wed 31-Dec-08 18:19:42

Thanks so much for all help, will try contact you

pleasantlyoutofdepth Mon 24-Jan-11 17:59:31

Hi there

My ds has been diagnosed with reflux, poor mite, and prescribed ranitidine and domperidone. We gave him the ranitidine on it's own at first and it seemed to be working but then stopped, so we started the donperidone as well today despite my being very concerned about side effects- he's just so miserable

What I wondered was how do I go dairy-free if I have to top up (milk production pretty meagre) what formula would any of you guys suggest? (I am already dairy-free myself as have allergy to milk protein.)

I know this thread is from december but I could really do with the advice.

Shamechanger Mon 24-Jan-11 18:07:54

Hi pleasant. Sorry to hear about your DS. If you have been advised to top up the only really dairy free formula is neocate and GPs are sometimes reluctant to prescribe this as its v expensive to the NHS. Soya formula was not really recommended by our doc as apparently most CMP intolerant babies are intolerant to soya; they don't like them having it sub 6 months anyway.

Other than that there's nutrimagen and pepti-junior, both of which have apparently really broken down the cows milk protein in them. Nutrimagen is really really foul. Both of these are prescription though I think you might be able to get pepti over the counter. Is there any way you could talk to a BF counsellor about increasing your supply? What are you topping up with at the moment?

duende Tue 25-Jan-11 21:45:16

my DS also suffered from reflux and cow milk protein intolerance. the first 5 months of his life were hell.
Anyway, we originally got Nutramigen over the counter, our pharmacist ordered it for us and we paid. Shortly after this we had an appointment with the paed who prescribed it and we no longer had to pay for it.
It does taste and smell horrible but it took DS about 24 hours to get used to it (at the age of 4 months or so). It took us far longer to wean him off it as he didn't like the taste of the normal/ sweet stuff.

Medicine wise, the only thing that helped DS was omeprazole. We saw a dramatic improvement within just 24 hours.
Domperidone made absolutely no difference whatsoever.

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