Neocate, hints and experiences? Losing my mind!

[hanflan]

Hi all. Bit of background: my DD is 5 weeks old and was having aptamil formula. She was a very unhappy baby, cries a lot, fusses over her feeds and then cries a lot afterwards, poos several times between each feed, throws up several times between each feed (which means she is constantly woken up when she is sleeping!) and then finally we ended up with mucousy poo with streaks of blood in it! We went to hospital and they suspected CMPA and prescribed Neocate. Does anyone have any experience with children being diagnosed at a similar young age, similar symptoms, and best of all, some success stories?! Due to all the sickness I am not sleeping and I'm slowly losing my mind! My second question is does anyone use neocate without any thickening agent? The consultant didn't want to prescribe a thickening agent and wants to see how it goes with just the neocate first. Anyone else use neocate on it's own?
Thanks in advance!

Hi hanflan. I really, really feel for you. It's horrible, isn't it? Especially if it's disturbing her sleep, awful for both of you.

My DD is 1. She had many of the same symptoms as your poor DD (no blood however), and was diagnosed with reflux at first. We were given meds for that, and started her on the Aptamil Anti-Reflux formula, but that just made her constipated in addition to everything else! She was then diagnosed with CMPI at about 2 or 3 months (would've been earlier if GPs had listened to us!). We haven't had Neocate, the first dairy free formula we tried was Aptamil Pepti, but then she had gastroenteritis and developed lactose intolerance as well... We were then put on Nutramigen (at about 8mo), and haven't really looked back. DD was 1 last week and is still on the Nutramigen, and will be until 18mo but that's because changing back to the Pepti bothered her, and she has issues with solids. BUT she hasn't been sick for months and months, and is so much happier.

Are you under a dietician? Ours gave me some good advice, including not rushing the reintroduction of dairy, and also some recipe books for weaning (I know that's a long way off in your case!). If you're not, I'd really advise asking your GP or HV if that's a possibility. Just talking to somebody about it was a big help.

I hope things improve for you soon

Thanks for replying! Do you remember how long it took to notice a difference once you got the right milk? We are not under a dietician but have been seeing the paeds team at the hospital so far.

I would say it was a fairly speedy change. She certainly stopped throwing up straight away, and was much calmer after milk (less screaming, less trapped wind, less making us walk the room with her as it was the only way she'd settle, etc). She also started actually finishing bottles, rather than taking 1oz and refusing any more, until an hour later when she'd scream for another 1oz! That was a massive improvement. Does DD drink a 'lot' of milk or does she just take tiny amounts? It's so difficult when they're as tiny as your DD!

How have you been finding the Neocate so far? Or have you not started it yet?

We started it yesterday so still waiting to see! Vomit has reduced already but not completely stopped... However she is completely finishing her bottles very happily! She was only taking tiny amounts before screaming the place down so this is an amazing improvement. I am keeping my fingers firmly crossed!

That's great! I hope it continues to be so positive for you and DD, it's so much nicer when they're not constantly being sick or screaming in pain. And hopefully it'll help her sleep better too

Hope you are doing OK. My guess is that the reflux will stop too now, now that baby is on neocate. I don't think a thickener will be required either.

Both my DD's were diagnosed young.
DD1 was put on Nutramigen at 11 weeks after a short spell on Gaviscon which just made her constipated. I lucked out and saw a GP that day who had just finished his pead rotation in the hospital and he suggested Nutramigen. Her main symptoms had been needing to be held constantly, no sleep etc..
She slept 8 solid hours that night after 11 weeks of 1 hour sleeps and being a Velcro baby.
She went straight on to cows milk at 12 months and was fine. She is very pale and has dark eye circles, even now at 4yo.

DD2 was put on Nutramigen at 8 weeks and I expected immediate improvement but it didn't go like that. Her head remained covered in cradle cap, she was pooing mucous very frequently and

had thrush in her nappy that was impossible to treat and she was very sicky, constantly puking. She went onto Neocate at about 10 weeks, no thickener and her poo issues resolved immediately along with the thrush and cradle cap. Her sleep took 2.2 years to resolve sadly! I tried her on cows milk at 12 months and she reacted terribly. I tried again at 13 months and she was absolutely fine.

Hope some of that info is useful! Good luck with your LO. Make sure you get a good pharmacist and are organised with your repeat prescriptions. Running out isn't an option and if you have a friendly pharmacist they might keep some in stock for you so you can have the odd cheeky can when waiting for a new prescription to come in.

I praise the scientific miracle that is hypo formula but I am so glad those days are behind me! My DD's are lucky that they grew out of their CMPI so young.

My DD loved it! We did use a thickener on the advice of the paediatrician, but my DD was a bit older than yours and was particularly sicky (exorcist-style...). I found she actually vomited more originally on the Neocate as it was very thin, although her pain seemed to stop quickly. If the vomit is already reducing, you probably won't need a thickener. If you do need to use one, we had Carobel by Cow and Gate which is supposed to be very gentle. DD was on Neocate until she was 2.