So unhappy

[Mamma2010]

Hi all,
I suppose I'm writing this just for support!
My daughter is six months old and has a cows milk protein allergy, she also has silent reflux which she has ranitidine and gaviscon for.
Since the medicated milk was introduced things have improved slightly but by no means significantly.
She is so clingy, she won't go to my husband, mum or friends. She basically clings to me 24/7!
I don't get a break ever unless she's asleep and I go for a bath.
She's co sleeping just so I can get some rest!
She won't take more than 3oz at a time and I've been weaning for about 3 weeks.
She is harder work than any child I've ever know (my first was a dream)!
I feel so alone and low, I'm already being treated for PND but this has me at breaking point!
I'm so resentful because my husband doesn't have to deal with any of this! The burden is 100% mine!
Please don't judge or give unhelpful comments such as "you've spoilt her" I really don't need to hear that I'm failing since my subconscious tells me that hourly!

Try adding a drop of vanilla essence to the milk. It was recommended by my DD’s Dietitian.

I have been there and you have my UTMOST sympathies! DS ended up hospitalised because he stopped eating entirely, no one believed me and eventually I just took him to A&E, which got the ball rolling. You need a referral to an allergist if you haven’t already got one. Using a sling helps enormously, and it WILL get easier as she gets more mobile-walking is an even bigger milestone than normal because they’re upright more and so in less pain! At our worst we were under the care of an allergist, SLT, dietician and paediatrician. Now DS is 3.5, still a skinny little thing, but SO much happier. Good luck OP-I promise it will not last forever and every day you are closer to full solids and walking, is a good day!

I have been giving her the Nutramigen since yesterday and the vinegar smell has all but gone from her breath, she really hates the taste but I will keep going because she seems a little more settled!
I'm dubious about adding anything to mask the taste in case it becomes something she relies on at each feed!
If she starts refusing I will ofc reconsider!

I feel for the first time in six months we are getting somewhere

I will keep you all posted, thank you again everyone! Xxx

If she likes the carrier, then you might well find it worth getting a baywearing coat or cover - that way you can use it even when it's cold or rainy. I found it made a huge difference if I could give dd1 a good few hours of sling time - it seemed to help her be more settled and happier for the rest of the day. Possibly because she got to catch up on sleep, as well as the positioning helping with the reflux.

Just to say you are clearly doing a fantastic job. Great on the referral. I agree with the advice on sling and upright pram. I really would just bundle up and head out, I found being out (even if just for 10mins) really helped.

Remember you are almost through it, soon she will be weaned and spring will be here. Imagine being sat outside with the baby on a rug and the sunshine on your face xxx

What a lovely message thank you :)
My faith in humanity is restored, it's so comforting knowing I'm not alone 💖

Hi all,
So she HATES Nutramigen and she's vomiting up every feed ( only takes 3oz at the most) and her poo is both loose and hard!
😩😩😩

Stick with the neutramogen a little longer but just a few days to see if it's just her body getting used to it, but if she keeps vomiting then go back and ask to try neocate. My ds has just gone on to neocate advanced and he was being sick the first few days then it all settled down again. I think it was just a change in taste and new stuff going into his body that he had to adapt to. Ask to see a dietician and don't be afraid to turn on the water works if you need to. Sometimes it's the only way to get their attention. Good luck.

Hi all bit of an update:

My LO is worse than ever, screaming day in day out, vinegar smell so strong on her breath writhing in pain, both constipated and had loose stools!

Going A&E literally can't watch her like this anymore 😢

Oh bless, keep us updated from A&E. When my sons breath smelt like that he had tonsillitis-but had a high temp with that.
Thoughts are with you

I have read this thread feeling so upset and angry for you and your DD.

Swapping from Aptamil Pepti to Nutramigen was absolutely useless, as Nutramigen also has CMP in it, though very broken down. She needs to be tried on a completely diary and soya free formula, like SMA Alfamino or Neocate. She may also need to move on from Ranitidine to a PPI like Lansoprazole or Omeprazole.

Are you going to an A&E attached to a large hospital? If so, ask if they have a paediatric allergy clinic, or paediatric gastroenterology. Push for one of the Drs to come down and see your DD.

I am so angry on your behalf that your poor child has suffered all this time due to a useless GP. You should have had a referral by now.

Literally reading your reply's crying! Thank you so much guys at least there is someone listening to us!

My HV just told me I'm being irresponsible going to A&E as they are so busy.......

My response was colourful to say the least! I will keep you updated 💖💖

No, it was your HV and GP who were being irresponsible in not referring/prescribing way before now. Part of the problem with over-attendance at A&E is down to failures at primary care level, which they know full well. If they had done their job properly, you wouldn't be attending today. I don't blame you for having had enough of it. Do what you need to do to get the care your daughter needs.

Please please take medical advice and I cannot recommend this course of action but you can seek advice about it.
My son had reflux issues and during the day he would only settle down if he was on his front over a bended knee - we spent hours patting his back doing this which was the only way to settle him. When we took him to the children's hospital the consultant told us that babies with reflux often only find comfort laying on their tummies which of course is against current safe sleeping advice. If your pram is a traditional one this may be why she hates it and might do better with more of a pushchair than lying down. A sling will also be a good idea as she may be better not being on her back.

And we were also advised to introduce solids from 4 months as that settles down reflux babies and it worked. All things to talk about with your medical professionals.

Nutramigen still has cmp the same as pepti. Google infant milk prescribing guidelines. Arm yourself with the info then do not leave your surgery until you have a prescription for neocate AND carobel (thickener as neocate is very thin). Neocate is completely cmp free and will probably transform your life. Make it up approx 1 scoop of carobel for every 3oz of neocate. Do it today. I was EXACTLY where you are now, a year ago. Our lives just literally transformed once we got neocate.

Ps if they don't give you carobel you can buy it from chemists. My doc wanted me to persevere with just neocate first bit She was so sick as it was so watery. So I bought the first couple of boxes myself and then after that told the doc it had worked amd he prescribed it from then on.

Hope you get some help. You know your child better than anyone, make them listen! It's bloody hard when its day in day out but you will get there. You're certainly not alone! We feel your pain.
Having had silent reflux myself (I thought only babies got it!) recently I can honestly say it was the most dreadful pain ever and I cried like a baby for DH not to leave my side - I understand little one needing you constantly.

We have omeprazole and carobel 🙏🙌🏻

That's good news. I hope this brings comfort to your DD.

One thing to be aware of, is that this will not fully solve the problem if she has CMPA/I, so if there are any symptoms remaining after 7-10 days, you might need to go back and press for a trial of dairy-free formula. It is very expensive, and so GPs can be reluctant to prescribe, but it is very important for your child to not be eating anything she is allergic/intolerant to, as this can cause long-term issues.

I will keep my fingers crossed that it is not an intolerance/allergy, though, and the new meds work like a dream. Good luck!

Thanks lovely,
We have a specialist app in feb so if things are not improved I will push for neocate or similar! Xx

Hi @Mamma2010

My DD was just like yours. She was CMPA but was BF. Once I cut out dairy I had a different child in a few days and after a few weeks she was happy! A very good friend had the same issues you're describing and they ended up on neocate and then other one described by PP and their little boy also changed dramatically over a few days!