Why do healthcare professionals not care about uncomfortable babies?

[TheCluelessMum]

Hi,

Hoping for some advice or support. Feel like no one listens and left struggling on my own.

After a few weeks of me advising to my HV that my son was uncomfortable all the time, she suggested CMPA. GP changed milk (nutramigen) and son was like a different baby.

He then started loosing weight so was advised to go back on cows milk to help him gain (he was prem so already “low” on centiles )

Of course him being uncomfortable came back. We then spoke with GP and said it was unmanageable, he had cried continuously for days.

GP changed milk to high calorie cows milk free milk(infatrini peptisorb) He seems to like this milk. However within a few days of having it, he was screaming every time he had to take a bottle and vomiting bright yellow vomit. So was told to take him to hospital. They advised reflux, which had been irritated by going back on cows milk. So prescribe omeprozole.

This brings us to the present day. He has gone from taking 5/6oz milk to 3/4oz. He starts the bottle off well; but as soon as we burp him he refuses to take any more. Although he latches on as if he wants it, but as soon as milk comes out he cries.

He brings up clear thick mucus and won’t settle for 2 hours after each bottle, just grunting and bringing up this mucus. By the time he’s going to sleep after getting up this mucus, he gets about 2 hours. This is hard on him & me. Once he has got up all the horrible mucus he is a happy and content baby.

I don’t feel like I’m listened too. It’s always “oh well he’s gaining weight, by the time he’s weaning he’ll be fine”.

I have tried:

• Dr Browns bottles (teats 2 & 3)
• Mam bottles (teats 0,1 &2)
• carobel thickener

• NUK bottles

What else can anyone recommend?

Have you tried not burping him til he's finished drinking? If he's upset after burping but needs more milk id just wait til he's done and burp him then.

(Healthcare professionals don't "care" about uncomfy babies because there is actually v little you can do about it - babies have immature digestive systems and for a great number of them digestion just is uncomfortable til they get a bit bigger. They can't do much apart from rule out allergies and treat reflux)

Go back and insist on a referral for a paediatric dietician.

Mine was wonderful. She diagnosed my son's CMPA and was really helpful with weaning as well.

Breastfeeding? With your diet adjusted to avoid dairy?
I know it will not be easy but might be worth asking for some help to do it?
Maybe contact la leche league?

@MolliciousIntent yes, but he just gets so uncomfortable and needs a burp. I’ve been offered no support about exploring reflux and CMPA from anyone except HV and 1 random DR in A&E.

@Twizbe apparently a 6 week wait! - feels like a lifetime

@Skelligsfeathers bottlefed. So wish I’d breastfed, a genuine real regret. He was prem & via c section, milk didn’t come in for 21 days, but wish I’d pushed myself more. At least if he was breastfed I could control more what goes in him. Just a measly phone call with a GP who goes “ok try this milk now” isn’t helpful.

Okay, first of all sending you strength as I know how truly awful allergies can be. Secondly, my experience is anecdotal and not medical. I have a CMPA baby, reacts severely to milk with hives if it's just near her or been on someone's hands/ clothes.

Breastfeeding- don't regret this. It's not the be all and end all. I breastfed for 6.5 months and my little girl never had a normal bowel movement. I restricted my diet massively. The only thing to help was neocate formula and this sorted her out within days. I wish I'd stopped sooner.

Were you on the amino formula for nutramigen?

I'm pretty sure the formula you are on still has milk in even though it's a tiny, tiny trace. The amino acid forumulas are free completely of milk.

You absolutely cannot continue with a baby in pain. There are absolutely things that can be done and you don't need to sit it out.

Do you have a picture of the growth chart from when the centile started dropping? What was the drop? 99- 80 is very different to 9-0.4 for example.

I personally don't see how a baby on milk that is making them poorly and screaming can be a better choice?! Sending

I don’t have any good suggestions I’m afraid but I felt like that; I was saying to health professionals that DS never slept at night because he wasn’t happy laying on his back and they acted like I was complaining about the lack of sleep (to be fair I made no secret of how on my knees I was) but no one seemed to care about why he was so unhappy and when I look back I now think he had silent reflux (there were other symptoms too but I’d never heard of it so didn’t know to look out for it) whereas if they’d listened to what the whole issue was someone might have realised

Can you go back to the milk he was happy with, then maybe 1 bottle of the high calorie stuff a day?
It's really important that he drinks normally while you figure this out (within safe limits), the perfect milk won't help if he's too scared to take it.

Could you go back to the milk he was comfortable on, but with an extra bottle a day?

Firstly I would say, trust your gut with this. You know your baby best. With my second I saw the GP when he was a couple of weeks old - similar that he was just uncomfortable and bloated, couldn't wind properly. I'd tried infacol, made it worse, carobel - he was allergic to this so made it much worse, his nappies were awful, almost like slime!

He had the added complication of pyloric stenosis although I think that this made the GP take me more seriously when I suggested CMPA. They referred me to my HV who was able to speak to the dietician and arrange for a referral along with prescription milk - initially we tried nutramigen but that still has milk protein so we moved to neocate. My little still needed gaviscon and ranitidine along with that but the change was almost immediate.

With my first when I went to the GP as I believed he had silent reflux I was told that if I had a liquid diet I'd have reflux too...helpful! But as a first time mum I was much less confident than second time round. Keep pushing for answers for your DC, mum instincts are strong.

We also tried every kind of anti reflux bottle going! God they are a pain to wash and put back together! Reading your post reminded me of that, I spent a fortune on the bloody things 😂

Hang in there, it's so hard and at the time it seems never ending.

If you have a children’s hospital near to you I'd suggest taking them there - my GP wouldn't prescribe infant gaviscon but the children’s hospital did. They are dealing with this kind of thing day in day out so may be more help.

Op can I ask how prem your baby was?
Mine DD was 8 weeks prem and v uncomfortable and constantly made noise, she had reflux and one day it all just stopped. It was her digestive system being immature.

That said....if he improved on the nutrimigen it does suggest he has an allergy. I'd keep pushing the GP. Calling every day, speak to someone different if you need to but make sure they know having a baby as upset and uncomfortable as yours isn't isn't option. There is plenty of cmpa friendly formulas they can try to combat the weight loss. Also push for dietician referral.

Wishing you and your little one all the best. Its a really hard place to be and makes you feel so helpless

Can you get Alfamino formula in the UK?

Alfamino is an amino acid formula, cow milk free.

Can you go to a private pediatric dietitian?

I don't think you should wait.

Take the place on the waiting list. We struggled for 16 weeks with no one listening to me about how sick formula was making my son. She diagnosed the CMPA straight away.

oh OP really really hard!! DS had CMPA and reflux and it was awful seeing him in pain. Appreciate this might not be the root cause for you but here’s a few things that helped:

*Giving it at least two weeks between swapping formulas, our allergy doctor told us that it takes this long for the formula to be in their system, so swapping and changing often makes it hard to pinpoint the problem and can contribute to tummy trouble by blocking them up
*Holding the baby upright when giving a bottle, supporting their head with the straightest back they can manage, and keeping them in this position for about 20 minutes afterwards.
*Moving onto amino acid based formula (Alfamino first but then onto Alimentum Similac) other allergy milks are made with cows milk with the protein taken out so contain a tiny trace and once we were on to this he was flying. If this is the path you go down make sure you get this on prescription because the tubs are half the size of “regular” milk and very expensive.
*Ignoring almost every bit of advice that non allergy parents gave me, including how important routine was. Squeezing in an extra bottle and loosening up did us both the world of good.
*Start a long tv series that you’ve never seen before for the long nights. DS was born May 2020 so I inhaled tv programmes and films just to keep occupied as I felt so consumed by the worry of it all!

Sorry, what i meant was that with a ton of support and hard work, it is possible to relactate ie start producing milk . It might just be worth looking into?

An update, my son began to choke on his reflux today. He started to change colour, almost blue. I managed to dislodge a large ball of clear mucus. He was like the exorcist. I contacted the local childrens hospital who didn’t want to see him, but asked us to up his omeprozole to 6.5mg.

I recently upped his teat from MAM 0 to MAM 1. He is less sick on the MAM1, however more reflux.

do you think I should go back to the MAM 0 and just put up with the sick? Is there a correlation with teat size and reflux?