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Any mums with Baby on Neocate - am desperate please help!!

(18 Posts)
Laineyanne79 Wed 05-Mar-14 08:38:02

My 12 week old son has been very poorly since he was 3 weeks old. He got admitted into hospital at 5 weeks old and was medicated for reflux (silent).

At 8 weeks old we saw the paedetrician and he diagnosed a severe milk allergy and put him on nutramigen. After 3 days he was so bad he had to be switched to Neocate.

He has been on it exactly 4 weeks now, some days there is some improvement but he then goes right back to where he was.

He has been refusing to feed since 1am this morning and screaming for most of it. Also have a 17 month old daughter to look after so I am exhausted and drained sad

The paed said that he expects it to take 7-8 weeks for him to be better.

Has anyone else been on Neocate and it's taken so long for baby to get better?? Really need to hear of a similar situation where baby got better in the end as most things I have read baby got better by 4 weeks.

Sorry for the long post, I'm just desperate and sat here in tears

freefrommum Wed 05-Mar-14 09:21:43

Is he still on reflux medication? If not, it sounds as though he may well still need it. For some babies with milk allergy, the switch to Neocate is all they need to get better but for others they still suffer badly with reflux and need medication. It's also worth propping up the top end of the mattress (eg pillow underneath) to help with the reflux during the night and trying to keep him as upright as possible when feeding. I really hope things improve for you and your little one soon.

Laineyanne79 Wed 05-Mar-14 09:38:06

Thanks for the reply. Yes he is on max dose of ranitidine and also had infant gaviscon. His Moses basket is raised at one end and we always hold him upright during feeds and for at least half hour after. That's what is so distressing, we are doing all that can be done but he still not right so feel helpless.

Paed doesn't want to change reflux meds as he is convinced it will go once milk protein out his system and his gut is healed. Whether it will I don't know, but am glad they not taken them away!!

Parsnipcake Wed 05-Mar-14 09:42:24

Hi, I'm a foster carer and I have looked after a couple of similar babies. It feels so awful when you are so sleepless, but sometimes it is just waiting, and it WILL improve. Can you put a chair in the garden and just set your toddler loose while you sit back with baby. Sometimes I just had to give up in everything and just sit holding baby. Once I accepted that was my day, I coped better.

Laineyanne79 Wed 05-Mar-14 10:48:25

Iv got my mum on route today to help. I am lucky that my toddler plays well on her own and if that falls Baby tv does the trick! Just feel guilty as I feel I'm not giving her enough attention. Most days I can do what you did and just think it is as it is and get through it. But on days like today when he completely refusing to feed and his cry sounds like a proper pain cry I find it hard.

I will bounce back, I have got this far. But you will know what it's like, some days you hit rock bottom.....but then at least the only way is up!!

nosleeptillbedtime Wed 05-Mar-14 11:21:29

I am so sorry you are going through this. Our little boy had reflux due to food intolerances. I know how awful it is when they cry and scream in pain and you can't stop it. We couldn't get our boy to take neutramigen so I had to continue breast feeding on a restricted diet. It did take time and he did get better, though was nervous about feeding for quite a while after the pain went. Now he is a happy, giggly, active, confident little chap so it does get better! And actually, I think because of the sleep deprivation my memories of it all are quite muted. Hang in there, it does get better!

MiaowTheCat Wed 05-Mar-14 12:08:47

It took us about 4-5 weeks before we saw a sustained improvement with it. Had a few good days and bad days until then and about the 5/6 week mark I realised we hadn't had a bad day in a while. Takes a while for the gut to repair itself - added in that it's horrible stuff to deal with and it seems an eternity for no reward at all. DD2 did still throw up lots on it though - but the screaming part of the reflux went... hell even early weaning on the advice of the dietician didn't sort out DD2's throwing up - it just made the vomit more interesting (she seems to be outgrowing that finally at almost 1year... my lounge carpet will never outgrow it!)

Did you transition onto it gradually? We did an oz at a time swapped over - meant she took it fine in the end - but I did find she liked her "milk" warmer than you'd think a baby would do (she still does now) in order to get her to drink it. She started getting more and more reluctant to take it after hitting the 11 month mark and is now on Alpro 1+ with vitamin supplements... but the light at the end of the tunnel is at nearly 1 we're past the baked goods containing milk part of a reintroduction challenge, she's off the top of the height chart and the smiliest little girl you could hope to meet.

And yep you can hit rock bottom with it - with DD2's issues, coupled with our GP being a consistent twat over the neocate prescriptions - I'm still on anti-depressants and having anxiety attacks now!

Laineyanne79 Wed 05-Mar-14 14:40:51

That makes me feel better knowing that there are others out there who's little ones took longer to get better too. No we went straight onto the prescription milk - the paed said because the allery is so severe he had to come off the normal milk straight away. He likes the Neocate and drinks it fine when he isn't in pain. I just think he has developed a food aversion due to being in pain more than not when feeding bless him. But he def in pain today

Yes it does seem like an eternity sad but I will hang in there, got to haven't we - he needs us more than we need a break. Thank you ladies

freefrommum Wed 05-Mar-14 15:21:41

Food aversion is common in babies and children with allergies and severe reflux as they associate feeding with pain sadly. My DS still suffered with reflux until nearly 3 and was a nightmare to feed even though we'd eliminated all the foods he was allergic to. However, he's now a brilliant eater and loves his food.

It's great that your little one has taken to the taste of Neocate so well as I know so many babies hate it and take ages to accept it. Hopefully, things will start to improve soon and you will see the light at the end of that long tunnel...

GeorgeWinsor Wed 05-Mar-14 18:56:06

I have been through this stage, though fortunately it was with my first child so didn't have a toddler to look after. It does gradually get better, 4mths is an age where a lot of colicky babies improve and then 6mths normally sees another jump.

Things that I found helped;

Carrying in a sling, you have hands free to do other things and sometimes this soothes them to sleep and you can put them down

Sleeping on an incline, so blanket under one end of cot mattress or infant chair on upright setting

Dummy

Feeding little and often so tummy not too full and uncomfortable, also means you don't need to worry about amount taken as next feed will only be a couple of hours away

HTH

Laineyanne79 Wed 05-Mar-14 19:05:24

Thanks for the replies. Yeah I carry him around in a Moby sling - absolute life saver! His Moses basket is raised at one end and he has dummy as I know the saliva helps neutralise the acid. Some days we give him an ounce at a time to help him but today he flat refuses to drink at all.

We are currently sat on the childrens ward waiting for assessment. Will let you all know how we get on x

gretagrape Wed 05-Mar-14 19:12:49

We were EBF'ing when our son went onto Neocate at around 4.5 months. It took at least 6 weeks for us to actually notice significant improvement (though the first two weeks there would still have been the proteins in MY milk) but it was still a bit erratic after that - some days he wouldn't throw up at all, others even more than before he went on it.

Now, at 11mo, he is an unbelievably happy baby and eats whatever he can get his hands on - never refused anything, first taste of solid food was 12 teaspoonfuls and the only reason it stopped there is because that's all I had!

You will get to the point where you suddenly realise that your baby hasn't thrown up/screamed/refused to nap etc today, and you'll start to see more and more improvements as their system starts to heal. He will get there.
x

onetwothreefourfive Thu 06-Mar-14 15:49:48

Message withdrawn at poster's request.

MistyB Thu 06-Mar-14 19:13:34

Is it worth asking if baby probiotics might help?

MiaowTheCat Fri 07-Mar-14 07:39:29

For a while until things settled down with us (thankfully we got DD2 diagnosed quite early on cos I'm a stroppy cow who knew something wasn't right from the start) we found we could get her fed with less fussing and struggles if we caught her half asleep to do it.

She's started to refuse the Neocate now at 11 1/2 months having realised there's stuff out there that doesn't taste like shit I think - so we've taken her off it just before the 1 year mark after working through a back up plan with the dietician.

vikinglights Fri 07-Mar-14 07:43:35

It took dd2 a while to settle after she was put on neocate. It also took a good while before the slightest bit of wind/tummy pain didn't send her into hysterics. I think she remembered how much pain she had been before in and panicked even though she wasn't acctually in that much pain now iyswim

AllergyMums Thu 13-Mar-14 22:01:38

Just wanted to pile in and say it does get better. DD is reflux and allergies too. Milk, egg and some herbs. Reflux triggered by sugar and fat. Omeprozole and Ranitidine got it under control but if it kicks off then we find it takes up to 8 weeks to get it under control again so for some I think it just takes longer. Hang in there...sleep is in your future.

Stellarella123 Thu 20-Mar-14 23:15:10

My ds had same problem, he's 3 now and all a distant memory, he was on same meds but I found that nothing made much difference other than carobel thickener, and also a probiotic that dietician prescribed,
I felt none of the doctors, hv had much advice, it was a really hard time, but we got through it, by any chance does your baby have a tongue tie? When my ds was just over 1 we were told about a feeding specialist in the children's hospital that we could have self referred to, unfortunately she only dealt with baby's under 1, so it was too late for us, but she reckoned my ds had a tongue tie at the back, worth asking doctor to refer u to someone who could check?

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