Hi All,

Am new to this site so any advice greatly appreciated! My son Tobey was born prem and was diagnosed with reflux while in the NICU, we are currently under a Neonatal specialist until Tobey reaches a year old. He is currently 3 months corrected age.

Tobey's reflux was controlled by losec suspension while he was being tube fed but since starting the bottle we have had nothing but trouble He is on Pepti Jnr and due to his low birth weight we need to get at least 700mls into him per day (not easy)! Our specialist prescribed 6.6mg of Losec daily which is a small dose and the other day also put us on 1ml of domperidone 3x per day. My specialist is adament there is no point in raising his losec dose anymore for his weight because there is no further effect to be gained from having him on a higher dose. This seems very odd to me from what I have read about doses on this forum, thoughts? Would you seek a second opinion?

I am currently splitting his small dose but am going to try all at once for the next few days prior to his first morning feed after reading posts on the subject!

He is noticably refluxing a good deal of the time, sleeps poorly during the day (great overnight though) and it is a battle every day with the bottle. Some feeds he takes happily, other's he point blank refuses. It seems that when the milk hits his tummy it either feels ok and is silent or there are huge rumblings and it is the rumbling feeds he ends up refusing, presumabably because it hurts?

Am nearly at my wits end, was hard enough him being born at 29 weeks with liver problems without having his reflux not controlled correctly!

Thoughts please??? Thanks so much!

Have you looked at the dosage chart on http://www.cryingoverspiltmilk.co.nz ? This will give you an idea of dosages.

A couple of things spring to my mind.
*He needs a higher dose of losec?
*Moving to the losec granules instead of suspension
*Moving from Pepti junior to Neocate.

Where in NZ are you? Would it be worth seeing another paed?
Sorry, just read you title...would totally get another opinion.

How much does he weigh?

Sorry, have to rush off for kids bedtime, will come back later with a few more thoughts.

Yep have looked at the dosage chart which was why I thought our specialist may be wrong or misinformed, as he is a neonatal specialist he may not be that informed on reflux? We are already on the granules (probably wasn't clear in my earlier post) but have only been on them for a couple of weeks. I will def ask about the Neocate but a bit reluctant as it is a miracle he even drinks the stuff from what i've heard! We are in Wgtn and he weighs in at 4.65 kgs currently.

If anyone can recommend a paed in Wgtn area I would be grateful! Please message me if you can Thanks so much suomi, is so amazing that this forum exists and people are so generous with their thoughts, so helpful and nice to know I'm by no means the only one!

Back again.

Emily never improved until we had her on a good dose of losec and Neocate.
Everyone kept telling me that her dose was fine (10mg) and it wasn't. It wasn't until she was on 3mg per kilo that she started eating and stopped screaming!

Lots of reflux babies have issues with milk, and Pepti-juinor often doesn't cut the mustard.

I'm in Auckland, so I can't help with paeds but I hope someone can help.

Would look at getting a second opinion from a paed or a gastro-paed. It sounds to me that pepti junior isn't being well tolerated (it still has trace amounts of dairy in it) and you'd be better off trialling neocate. I've been through the whole bottle aversion, not drinking etc etc with my twin girls after ending up with a dehydrated baby in hospital at 2.5 months. Took me 8 months to get over it to the stage where they actually drank a bottle while awake. (note a great trick if they're not feeding is to give them a bottle while asleep, and they drink better at night time cause they're so exhausted they don't think about the drinking). Most of our problems were due to diary and soy intolerance/allergy and once we changed to neocate things changed quickly for the better. 30% of reflux babies have allergy's or intolerances to dairy ....

It also sounds like his reflux isn't currently controlled. So a higer dose may be needed to help control it. A couple of things I found really worked with my two, was to have their cots tilted on an angle, keep them upright on my shoulder for half an hour after a feed (reduces the pressure on the valve that isn't working properly till the feed has moved further down into their tummy), and I didn't give my girls ANY tummy time till they were about 7 months old. I don't have many fond memories of that first year ....

It really does sound like Tobey's dose is to low doesn't it. You would think the fact I already have a specialist would mean a smooth ride but I am going to try and persuade him to up the dose, wish me luck! Do you think its worth trying all in one dose too? If he won't then I will def get a second opinion which I guess will mean going back via a GP and getting referred...
I am going to talk to them about neocate as well, is it as horrible tasting as the pepti Jnr and will it be as good for his weight gain? I am wondering if this may be part of the problem..while were in NICU Tobey had a terrible time on my breastmilk he didn't tolerate it at all and even lost weight which is why we are on Pepti Jnr.

Thank you for the suggestions, am already doing most of these things as had read your posts to others Dolphin, so helpful!!

There is certainly room to move with his Losec dose but it isn't an inadequate dose. You may find that he has more benefit out of the same dose of granules than he did out of suspension but it may take three weeks to see the full effect. It is a bit hard to split 6.6mg of granules into two doses - in fact how are you guessing 6.6mg???? I hope they don't have you counting it out. Good luck with talking to the paediatrician or GP.

In Pepti-Junior the proteins are broken down into short chains (peptides) whereas in Neocate they are broken down into amino acids so Neocate is more hypoallergenic and more readily absorbed. It may well be of help and it would be better for his weight gain than Pepti-Junior.

Have you tried Gaviscon Infant in his bottles? I wonder if it is actual reflux by your description that is causing problems rather than the acid in the reflux. You need to check with the doctors first though as he was so prem.

Hi Roz, Yes I am roughly counting out the granules, there seem to be about 60 in each 10mg tablet so counting out 40 and giving to him all in one dose now. Had some success with him over the weekend but I don't really know how as I changed his losec dose to all at once during the morning, he has now been on Domperidone a few days and I also introduced gaviscon. He is like a different child who actually takes all his feeds (so far touch wood) and is shock horrer sleeping during the day! Any opinions on which thing would have had the most impact?! The gaviscon has definately firmed up his poos already though which I guess will be the next issue, constipation - will check some other posts to see what people recommend!

6.6mg seems a bit of difficult dose to me. Either 5mg or 10mg makes more sense for ease of giving, and both of these are appropriate doses. So if you have better things to do than count 40 granules, talk to the doctor and use that angle. Great that he is better though.
If I had to choose one that had made the most difference, given his symptoms I would say Domperidone. Emptying his stomach faster would mean that he is hungrier and also not refluxing as much. Domperidone is also good for consiptation. This is why my eight-year-old is on it currently. It may not be enough to combat the Gaviscon caused constipation but if he is so good, maybe you could just try dropping the amount of Gaviscon doses if that happens.
There are lots of natural remedies that help with constipation but often with Gaviscon, Lactulose is needed.