**NEOCATE HELP**

[leahmaysimmonds]

My LO has been on neocate for now 2 weeks because of suspected cmpa and I don’t see any difference. How long did it take for you to see a difference? I’m losing hope 😭😭

Took more like 3 weeks for us but we still were changed on to something different after that because things weren’t great still. What’s baby’s main symptoms?

• Feeding issues:

Arching back, gulping, choking, clicking sounds.

Throws head back.

Spits up milk frequently.

Sometimes will refuse then food, take it then turn head away and arch back and put legs up to chest and spit it out her mouth

Unsettled and irritable after eating

Possible posterior tongue tie

• Digestive issues:

Has had diarrhoea consistently. Green bubbly runny foul smelly poo. Before this she had constipation for many weeks.

Gas also smells very bad and she sometimes cries when passing it.

She is very gassy in general.

Continuously putting knees up to chest and turning red holding breath.

When I touch her tummy sometimes she’ll cry and tense up.

Always wriggling sometimes will turn red hold breath and cry

Cries on her back sometimes will scream

• Sleeping issues:

Has trouble sleeping, sleeps from 3-8 hours. 8 hours is very rare, only if I’m lucky

Wriggles in sleep putting knees up to chest

Will not sleep on her back so I HAVE to make her sleep on her side otherwise neither of us will get sleep

I hold her up for hours and burp her and when I put her down she’s still very gassy

Sleeps with mouth open

• Rash:

She constantly attracts thrush on her genitals and nappy rash.

Sometimes will have rashes around eyebrows after feeding

• Breathing issues:

Sounds very nasally congested all the time

Breathing loud

Sneezing and coughing a lot. Multiple times a day

Makes grunting noises sleeping especially (show voice notes)
Will scrunch up her face in pain while doing it

I have tried water, gripe water, infacol, gaviscon comfort milk, anti reflux milk and other colic relief and reflux drops. Feed her at upright angle, do bicycle kicks and massages for her.

She’s teething and has a posterior tongue tie. As she’s4 months they said they can’t do anything about ti

My daughter is 12 now and still had a CMPA but I really feel for you. I breastfed her until 18 months then I added half breast milk and half neocate. Once she was fully on neovqte the change in her was incredible. She was obviously still getting some dairy through my milk and it was pretty instant that life changed - she cried for 18 months then suddenly she was happy. I hope things improve. Even now I have a bit of a phobia of babies as it was such a horrible time. I also hope she grows out of her allergy. Most do by my daughter’s age - she’s one of the few unlucky ones.

I work on a children's ward. We tell parents if there is no improvement in 2 weeks then to see the doctor again. CMPA is nightmare, it's a case of trial and error until we find the right milk for the baby. Sometimes adding omeprazole helps if there's reflux as well.
That's how it works with us anyway, im sure other hospitals have more sophisticated ways of treating it.

Thank you everyone. I’ve not had any help from GP they said she looks fine because they assessed her when sleeping
I asked to refer her in October but they only referred her to a dietitian in December. I’ve been having to buy neocate myself. Before that I’ve tried everything for her reflux and colic. She’s very gassy on neocate and it’s been 15 days. She’s always putting knees up to chest when sleeping and wriggles so much. She’s on her side and even has a sleeping wedge. Im getting no sleep 😫

Oh poor baby. We’ve had a terrible time with it too, and the reason I asked was because we saw no real improvement until we had a maximum dose of omeprazole added to ease the severe reflux which it sounds like your baby has too- we used to have to take it in turns to stay up half the night each, every night and hold her upright so she could sleep or she’s cry and be sick constantly. She could never be on her back, even for the length of a nappy change it would aggravate the reflux! We also changed to SMA Alfamino and it still took several weeks on the new regime to settle at about 7months old but I look back now and wish I’d fought harder for them to take it more seriously sooner.
I hope you can get more help soon- but feel free to message me if you want to know more about our journey in case anything might help x

Thank you so much. I heard omeprazole can make gas and colic worse. How long did it take for you to see a change with it @SallyTheSloth xx

It wasn’t the instant miracle cure I expected it to be initially but once the dose was put up to the maximum it did have a hugely positive effect within days. We still incline the cot and she doesn’t tolerate being on her front for longer than a few minutes etc but it has really improved the reflux.
Can you try to get the health visitor on board instead if the GP is useless? Ours was great at liaising with the gp

Not neonate here but nutramigen. DD only has mild CMPA (main issues constipation & reflux) but combined with omeprazole she was totally different after about a month. It takes a while for all the dairy to leave their system I think.

Hope she improves soon, sounds really tough.

Hi, I know this is an old thread just wondered if you found the answer for your little one?! My LO has all of these symptoms and we have been on neocate with little improvement so far! Exhausted and sad that this is our life.

Hello, when did u see improvement, if any?
mynson has been on Neocate syneo for 2 weeks now and there is improvements but at night he is awake every hour pulling his legs and wiggling, grunting to push gas out.
today he had really bad bubble guts. Just hoping for improvements soon!

Since writing my earlier post back in October, we have seen much improvement, however it did take a while. I would say give it the full six weeks to see a vast improvement. She is so much better now. Still sicky and struggles with digestion but no where near as uncomfortable or in pain like she was. Stick at it if you can, I think Neocate can cause wind to start with x

Thank you for the advice! I’m currently up right now (4am) as my son is constantly pulling his legs and waking himself up. Clockwork!
not sure if it’s the syneo specifically or to try regular neocate but we’ll stick it out for at least another week or two.

How old is he? My little girl was exactly like that. Used to start at a similar time and she was so distressed and couldn’t sleep! We tried Syneo but found it made her more windy, so we stuck with Neocate LCP which she is still on now (6 months). It did take time but she is a lot happier now!