Introducing Neocate for 18 wk old with reflux/suspected CMPI

[feesh]

Not an allergy, but hope there are people on this board who can help me.

I'm an expat living in the Middle East, so I'm a bit limited in access to decent medical professionals, so I'm trying to navigate all this on my own really. I have a paediatrician who worked in England and seems to know what he's talking about, but it's always good to get second opinions and be as informed as poss.

My son, now 18 weeks, has been suffering with reflux since about 8 weeks. It hasn't been dreadfully bad, he's a smiley little chap, it just makes feeding him difficult and he squirms in pain during and after feeds. I'd already put him on a hydrolysed milk (Similac Advance HA) off my own back, just in case a CMPI, was the issue and he has now been on that milk for about 10 weeks.

He's also been on Omeprazole and more recently, Infant Gaviscon. (We also have a prescription for Domperidone, but I've never used it as I don't like the sound of the side effects and we seem to have more of a silent reflux problem than actual vomiting).

The Omeprazole worked well, but then he stared getting worse again, so we added in Gaviscon which i had previously been reluctant to use because of the constipation effects (as my little one was already prone to constipation). The Gaviscon worked well at first, but after 2 weeks on it it started to have no effect and feeding has been getting worse and worse.

I went back to the paediatrician last week and he now wants me to try Neocate, to rule out possible CMPI. (With the attitude that if it works, great, if it doesn't then we know we are just dealing with colic/reflux that hopefully he will grow out of).

We are still trying to source the Neocate, but it should be here tomorrow or Thursday. Yesterday was AWFUL, my little boy screamed and screamed through every feed and I ended up force feeding him :(

Can anyone give me any tips about switching to Neocate? I am very nervous about it, partly because of the taste issue and partly because it seems so very 'unnatural' to me and I'm already beating myself up enough about failing to breast feed!

I'm also really scared about the long term. What is the prognosis if Neocate does work? Will he have a dairy allergy, and will he grow out of it?

To make the whole situation even more complicated, my little boy is a twin - his sister doesn't suffer from reflux, but anything which makes my life even more complicated or time consuming is most unwelcome!!

Just bumping this up as the Neocate delivery is arriving on Sunday and I am really nervous about introducing it.

One of my twins had reflux, one had silent reflux. I really struggled to convince the GP to prescribe anything at all, but with a lot of pushing we ended up with both on Neocate, Gaviscon and a feed thickener called Carobel. They switched to Neocate instantly and didn't notice the difference really. I think the taste thing is an adult perception but babies don't have quite as refined a sense of taste. The Neocate was very thin and watery compared to normal formula, hence the feed thickener. We operated under the assumption that their discomfort was because of immaturity of the gut because they were born at 34 weeks, rather than any allergies. Neocate worked instantly. It was like I had two different babies. No more projectile vomiting or writhing and screaming.

When they reached 6ish months we started reintroducing normal cows milk formula again (we moved onto HIPPS) by alternating one Neocate, one HIPPS, and enough time had passed for them to have grown out of whatever had caused the reflux. We kept them on HIPPS for a month, then started weaning by 7 months and have never looked back!

I also recall being worried about the synthetic nature of Neocate but was willing to try anything! It's good stuff. It's not plastic! My babies were big fat chubsters on it.

Oh, and to reduce complication, I bought these little tupperware pots and measured out all the powders for the day's feeds the night before, the right number of scoops, scoop of thickener, packet of Gaviscon in each. So it was boil the kettle, tip the lot in. Might help to have a similar system especially if you have two different kinds of bottle to make up. They were specifically for formula, so fitted into the neck of the bottle so there was no mess. I'll see if I can find a link.

www.amazon.co.uk/gp/aw/s/ref=is_s_ss_i_0_10?k=formula+dispenser&sprefix=Formula+di

We used the stacked kind.

We had to introduce DS to Neocate when he was around 4-5 months old, similar symptoms to yours, along with poor sleeping, vinegary green nappies and weight loss. He was on ranitidine and domperidone for allergy-prompted reflux, but to be honest the thing that really worked for us was cutting out all dairy in my diet and breast feeding. I had virtually stopped feeding him at this time, and he was on formula, but I kept offering it - he suckled for comfort and then I started to produce more and more milk, til I could wean off any formula and use stick with BF. ten when I went back to work when he was 11 months I expressed a bottle, and fed him morning and night. Do Pm me if you want to know more about the CMPI side of things.
Neocate does taste horrible, unfortunately, though I know some people do try and improve it a bit with vanilla to make it palatable. Our DS was very reluctant to have it, though perhaps more because he associated anything in a bottle with pain in his tummy at that point, poor thing. There is also Aptimil Pepti, which tastes a bit nicer. All that said, many do successfully go onto Neocate, no problems. I'm sure you'll get some more specific advice on that from other posters very soon. Good luck.

Thanks Beamae, it's good to hear from another twin Mum! I currently make up 24 hours' worth of bottles every morning, is it OK to do this with Neocate? (I know it's against NHS guidance to do this, but it's a calculated risk I am willing to take). I'm already making up 2 different types of formula as his sister is on normal formula, so I'm well used to that :)

Because it's so runny, did you find you had to feed more often? Or does it still fill them up for as long? We have just dropped the dream feed and they're only on 4 feeds a day now, which was very much baby led rather than me imposing it. Did they drink it in similar quantities to normal formula?

I think my little guy has an immature gut too. They were born at 37+2, but he was much smaller than his sister and he has always seemed quite a long way behind her in lots of ways. I have a really strong gut feeling that his placenta was failing him and he was struggling in the womb, it's just a gut feeling though, I have no medical evidence. His cord stump was really puny and thin and fell off within 48 hours of his birth, which personally I think backs up this theory. Also i think he was born on the 'wrong' percentile for his genetic make up and has been making up ever since! He is now much bigger than his sister and has gradually moved from 2nd percentile to 75th! Thankfully the reflux hasn't affected his feeding too much!

How did weaning go, did you have to be careful?

Taranta I am seriously impressed that you went from formula back to breastfeeding. I tried to do similar with my little guy at around the 4 week mark, but we never got further than 2 breast feeds a day. I am way past the point of going back to breastfeeding now (if he was a singleton, maybe I would, but not with twins).

I didn't make the formula up in advance, but purely because I thought that they had enough tummy problems without me chancing anything. So with Neocate I made the bottles fresh. When we moved to normal formula I did cheat and rewarm. We used the feed thickener because they tended to projectile whole bottles as soon as they finished them, or half way through. The Carobel thickened the formula, keeping it down. Neocate has the same nutritional value per ounce of formula than normal formula, so even though it's more watery in consistency there isn't any need to feed more than usual.

I wasn't at all careful about weaning. We threw anything and everything at them. I think one of their first meals was steak and sausage off the bbq! We did a loose baby led weaning, no purees, just maybe softer veggies than usual. They just used to suck the flavour out of stuff that was too chewy for them. With cows milk we obviously didn't do bottles of milk until 12 months but I wasn't particularly careful about cheese or yoghurts. I reckoned they had already been tested on the cows milk formula by then so assumed it was fine and it was.