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Allergies and intolerances

Is Neocate the answer?

7 replies

carynh · 21/08/2011 16:35

My 8 week old daughter doesn't appear to get the urge to push since she was born & so we've had to help her to poo since she was born. We get loads of wet nappies but she doesn't poo unless given a suppository or the doctor suggested to stimulate her with a cotton wool bud & some vaseline! It's horrible!! They originally told us to just leave her to poo by herself but she got so constipated that the poo's wouldn't come out her little bum at all.

In the meantime, she's been screaming uncontrollably for no apparent reason. Went to see doctor after doctor but they said it was colic & that she'd outgrow it.
The NHS had told us we could have an "urgent" appointment but it would take over a month to see someone. I couldn't take it any more & paid to see a private paediatrician. He said he thinks it's a cow's milk allergy & suggested we try Neocate for a couple of weeks.
She's been on it for just over a week now & we've seen a slight improvement, i.e. no more crazy crying but is still not pooing on her own & is making jerky movements with her arms.
She isn't settling easily & is drinking half of what she used to drink on Aptamil.

Has anyone else had this experience? Please tell me it gets better as I'm finding motherhood really sucks & am not enjoying it at all.
My little one is uncomfortable most of the time & I'm really depressed having to deal with a crying baby who seems unhappy 90% of the time.

Any help/suggestions would be greatly appreciated.

OP posts:
JessKM · 22/08/2011 00:30

Im really sorry you feel like this and I promise you it gets alot easier, im assuming this is your first baby and it can be TERRIFYING!

My DD1 had bad bowel problems for a while after I stopped breastfeeding, they suspected a cows milk allergy and she was prescribed Movacol from the doctor which helped her out fabulously, now we just make sure she has plenty fibre and shes fine.

You did mention that she was only 8 weeks old and personally I wouldnt be giving her cowsmilk that young, if youre not feeding her yourself there are many many formulas out there that would be better for her IMO. Cows milk doesnt provide the nutrients shes gonna need to grow big and strong, and young babies stomachs find it hard to handle.

With all of our kids weve found Aptamil was the best one for them as its apparently close to breast milk, but different children work on different things.

You could try giving her a little bit of warm sugary water and just let her lie on her back with her nappy off having a kick, and rub her belly clockwise really gently which again worked for us.

I really hope it picks up soon for you, and dont be afraid to call your HV, theyre a wealth of information, as are pharmacists, GPs, NHS direct and friends with babies.

Good luck honey, and if you need any help or just someone to talk to, im here as are many, many other fabulous mums.

RitaMorgan · 22/08/2011 00:37

Aptimil is made from cow's milk, so isn't suitable for a child with an allergy.

JessKM · 22/08/2011 00:45

SMA do a constipation range, lovely I know!
This page has advice and offers different products based on that..,

JungleJunction · 22/08/2011 01:23

Usually I tend to read rather than post as I find it all a bit intimidating here but I couldn't let your post go by without replying.

It sounds as though you are going through a really tough time - my DS2 had very similar symptoms to your baby and it was a terrible time. It really put a strain on my marriage and family. Hours and hours of screaming can make everyone feel incredibly unhappy!

I cannot recommend <a class="break-all" href="//" rel="nofollow noindex" target="_blank">this book highly enough. It was recommended to me by another mum in the doctors waiting room. I went home and bought it that day and it became my bible for the next 3 months. The author, an American peadiatric gastroenterologist, puts the case that "diagnosing" colic is lazy medicine and these babies are screaming for a reason. Don't be put off by the title, it addresses milk intolerance in detail as well as reflux. I bought it thinking DS2 just had reflux (as did DS1 so I recognised the symptoms) but it turned out he was also intolerant to milk so was put on neocate at 6 weeks. It DID take a month or two to get the full benefit as his intestinal tract was all inflammed and irritated and takes time to heal, but we saw a definite improvement within about two weeks. Also, DS2 took a couple of weeks to come round to the taste and he only took about half his usual amount until he was used to it. I think this is very normal and many babies actually have to have their usual milk dilute neocate in reducing quanities (IYSWIM) to get them to take it as it is fairly unpalatable. (Don't worry, they soon get used to it, DS2 pants in happiness when he sees the bottle now!)

This book also talks about a syndrome called "grunting baby syndrome" and DS2 also had this by week 6 or so. He would strain and strain and become quite distressed then after a couple of hours would pass a soft stool. It was almost as though his abdominal muscles weren't working together properly. We were "lucky" Hmm in that we had two trips to A&E with him passing blood in the first few weeks so got a quick referral and they then referred us to a Paediatric Gastroenterolgist. They were brilliant. They prescribed him Neocate and lactulose for the bowel issue and it really, really helped. He was also given other reflux meds and will be on Neocate and a milk and soya free diet until at least a year.

It is really hard having an intolerant baby and I would urge you, speaking as someone who went through this all 6 months ago, to do these things to get the right help:

  1. Insist on a referral to a Paediatric Gastroenterologist. Do not be fobbed off with the diagnosis of colic and told she will grow out of it If you have to wait more than a week or so and can afford it, pay to see one as soon as possible. It made a huge difference to our Ds's care.

  2. Get the book and read it! Get educated and make sure you ask the questions you want when you see the doctors. I used to take the book with me to the appointments!

  3. Hang in there. It gets better I promise. Be kind to yourself and get all the support you can. Can someone look after your DD for even an hour or so in order to give you a break? DS is now a jolly, laughing baby. When he was at the stage your DD is, he would scream for hours at a time and jerk his body in pain the whole time. They key is getting the milk/medicine right and things improve beyond recognition.

    Good luck.
JungleJunction · 22/08/2011 01:31

Also, a couple of weeks is nowhere near long enough to tell whether Neocate is working and your baby has a milk allergy. The gastroenterologist told us they look at having it for 3 months minimum to see the full effects, not 2 weeks. Please do not stop it without talking to a paediatrician, preferably a gastro specialist.

JungleJunction · 22/08/2011 08:29

Sorry it is me again! Thinking about it this morning, I was wondering if they have properly examined your DD with regard to her bowel problems? There are more serious issues with bowels that babies can have but DS had very similar symptoms and he was diagnosed with dysmotility. We were told that his gut was probably a bit immature and the CMPI irritation wasn't helping and it would resolve with time but to use lactulose to alleviate his symptoms. It did make a huge difference and he poos just fine now without any help! We stopped the lactulose about 1.5 months ago.

Obviously I am not medically qualified and your DD needs to be diagnosed by a Paediatrician but it really does sound as though you need to go back and get them to look at her again.

Hope all of that helps!

garliclover · 22/08/2011 14:20

carynh, I have nothing to add to this (especially after JungleJunction's fantastic post) but an enormous amount of sympathy. My DS (now 14 months) has multiple allergies including cow's milk, and although his symptoms at 8 weeks were different from your DD's, your story seems so so familiar: the continual discomfort, being fobbed off by GPs, not enjoying parenthood at all. My DS was in such pain he would claw at his eyes all the time it was terrifying and depressing and awful. He would also scratch his head until it bled all over we had to co-sleep in order to hold his arms down all night.
Things began to improve massively as soon as I stopped breastfeeding him at 6 months and he was weaned onto a hydrolyzed formula. He didn't drink much to begin with, but then began guzzling it down within a couple of weeks, and his symptoms gradually improved.
Hang in there. This will pass, and you're clearly doing all the right things and seeking the right advice. Stay strong, you'll get through it!

P.S. The jerky arm movements may calm down once she is a bit older and has more control over her limbs, I think.

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