Highly likely my 14 weeks old daughter has CMPA, but no one believes me, doctors, A&E doctors & health visitors don't care

[Bighugs88]

Hello,
I am really desperate at the moment and I don't know how long I can carry on going like this. I suffer from General anxiety disorder and because my little daughter who is 14 weeks old is suffering and has various symptoms which are not going away and are getting worse as she is getting older. I am crying every day, I feel trapped, lonely and my husband says that she is fine and her symptoms are normal for a developing baby?!.

My daughter was born via C-section at 38 weeks 6 days. Straight after she was delivered there was no skin to skin contact as her oxygen saturation levels where 80%. She was kept in the neonatal intensive care unit and I was in a separate ward but could visit her and then I was discharged. My daughter was diagnosed via X-ray with right lung pneumothorax. She stayed in the neonatal ward for 6 days and had various invasive treatments via the nose and throat to clear the trapped air surrounding the lung.
She is EFF cow and gate 1 ready to feed.

However since from 2 weeks of life to now and still happening she has the following distressing symptoms which have been ongoing for that past 13 weeks:

Dry cough- happens daily throughout on and off the day. Even happens when she is drinking milk with no prior warning signs she will choke on the formula milk and then get really upset.

Loose runny stools daily have never been paste like. They are explosive and within seconds her upper back and clothes are always dirty. She has never had a normal consistency poop.

Excessive gas, during feeding she will unlatch and then latch back onto the tray numerous rimes, will move around a lot and put pressure on her bum as I can feel her on my lap during feeding as she wants to fart all the time.

Nasal congestion- it's not viral as it's been there for the past 13 weeks continuously. Sometimes there is mucus on her nose and other times not, but makes no difference she is always congested and has noisy breathing via the nose like the air is not being circulated properly and something is blocking the passage way for air she snores and snorts when crying.
Itchy eyes and nose when will rub these areas all day long. Pull on her ears all the time on and off during the day.
Feeding is stressful because as soon as she starts to feed she will love around a lot, latch and then unlatch on the test, will have dospcmfor and pass a lot of farts or during other times she will end up pooping. Unable to take more milk due to discomfort and behaviour as she is visibly upset and always hungry and not satisfied as she has gastric problems. Her stomach is not happy.
I have spoken to numerous doctors at my surgery but they say no it's not an allergy and try gavison. She does have reflux and spits out milk, but I don't think it's just reflux she has all these other symptoms happening at the same time.
However, I was desperate and spoke to health visitor last week and she said it seems like a mild allergy, but because baby is gaining weight so let's just wait and watch.
However, her symptoms and behaviour is getting worse if I was to weigh her in the coming days most likely she is hardly putting on any weight.
A referral was made to paediatricians on 2/01/26, but have no idea is the doctor did a urgent referral or standard as waiting to be seen is a very long time.

So I am hoping if anyone reading this can offer their opinions or advice and what shall I do next should I push the gp regarding the referral where shall I go?

Believe me I am so physically tired, feel nauseous due to my baby non stop crying all the time and it breaks my heart to see her struggle to feed and she is still hungry licking her fists all the time. I dread feeding time as I know she will choke and cough and will not latch properly.
Just so upset and I thought once I pass the newborn stage things will get better. I have an older daughter who is 8 years old and she clearly misses my time with her as I am always busy with the baby.
Sorry for the long post, but just feel so trapped and cannot sleep. So decided to start this thread.

Sorry for typing errors I was supposed to type that she latches and unlatches from the bottle numerous times. Eventhough I have not changed the teat sizes or the bottles.

I had made a note of all the symptoms and how long this has been happening for and who I have seen and spoken to. There is a doctor who listens and helps a lot but she only works certain days. I am trying my best this time making sure the gp listens as I have made a note on paper.

I cannot eat properly, miss my time with my older daughter, feels like I am truly forcing myself to enjoy my time as it's proving very tiring and difficult due to her health issues. I just feel like my life is on hold and that I have gone backwards since having the baby after a 9 years gap.

Some doctors aren’t helpful with cmpa/allergies

Have you checked for tongue tie due to the latching issues

if you have the money make a private app with Dr Neil Shah - it’s around £350 up at Portland street

he’s the best

if There is an issue /cmpa/reflux etx he will diagnoses and give you a prescription for cmpa milk which you will then give to Local gp

you sound very anxious - could your daughter be picking up on your feelings ? You said your dh thinks all is well

tho the symptoms you mention do sound alike there are allergies and likely cmpa

OP it’s tough being a first time Mum. Tougher still after the journey you’ve both had. Get the test suggested and if your concerns are well founded then at least you’ll know.

You sound extremely anxious and that you are focusing at micro level on every detail. It’s understandable but you’ll exhaust yourself and not be able to care for you little one (which includes caring for yourself) at this rate as parenting a marathon not a sprint.

It’s possible the professionals are dismissing you as an over anxious mother so try in your interactions to be measured and factual rather than emotional.

Good luck. You must be really tired as well as on high alert.

@Blondeshavemorefun thank you for your message. To be honest with you because of the various issues my baby has it has made my anxiety worse. I worry a lot and overthink, so it doesn't take much especially seeing my baby daughter struggle I feel very emotional. Since having her I have become very emotional. I was thinking about tongue tie a few weeks back, but when I mentioned this to paediatric A&E doctor he wasn't interested abd neither was this followed up on. I have seen various anterior TT, but have limited knowledge and awareness of posterior TT. She is able to move her tongue quite efficiently, but I am not sure the TT needs to be properly checked. Thank you for mentioning the private consultant as weist likely go there as I am getting nowhere with the NHS. My husband is very laid back he doesn't feed the baby and just thinks that everything is fine even though he has seen her cough and choke on many occasions. He just says jher behaviour and symptoms are nothing to be concerned about.

Have you looked into silent reflux? One of my godchildren had it and he was so uncomfortable feeding, in so much pain. They ended up prescribing him dairy free milk (which tasted vile!).

Also, my own son had severe reflux and had cranial osteopathy which really helped.

@Flora73 thank you for your message.
My daughter does have reflux, but there have been many incidents when she burps I can hear the fluid contents coming up her throat and when I see her face she swallows the contents and from her face this is painful.
I was hoping if you could tell me for your godson why was the formula changed I am aware that not every single symptom for an allergy will be present. But for reflux, medication given to try is usually gavisosß and acid reducing omperazole. Did the symptoms not go away after 6 months when baby I was able to sit up.
She does reflux alongside if she is not bringing out milk she has very loud wet burps.
She had her milk now she didn't unlatch dmthat much because she was sleepy. When she is unsettled during feeding she swallows a lot.
The gp yesterday at the appointment said I know her refluX symptoms and are managing but you could try gavison as the side effect is constipation and so the runny stools MAY BEOCME MORE FIRM.

Could someone mention good private peaditricans who can lso check possible tongue tie.

It's unclear but have you tried the gaviscon? My first son had similar with the distressing feeds (I can tell you how anxiety inducing it was for me, I'm not surprised you're so exhausted) and gaviscon did help. What really helped though was a private lactation consultant who divided a missed posterior tongue tie.

With kindness to GPs and HVs, they are not the expert on your baby. Trust your gut x

@mumofbun
Thank you for your message. Dis your son have other symptoms alongside reflux. How was his stools during that period of time.
Dis the gavison cause constipation?
My daughter has not tried the gavison yet
We live in London there are private ENT who also check tongue tie. I have looked at my daughter's tongue quite a few times when she is settled and when she cries and her tongue is raised I had a good look I know definitely that there is no Anterior TT, but not sure about posterior as that is very hard to spot unless checked by a professional. How was the TT procedure and the recovery for your son?

We had lots of problems with the the cow and gate ourselves involving reflux, runny poops and bringing it back up. We changed to Kendamill and it made a massive, massive difference.

Not sure with regards to anything else sorry :(

I would definitely try the gaviscon as it might relieve symptoms anyway - I'm not sure why you're concerned with constipation when currently the stool is very runny? Anyway it didn't cause any issues for my son,

With the tongue tie the only small sign I saw was that when he stuck his tongue forward it didn't come to a point but was instead slightly heart shaped. Apparently due to a restriction at the back.

The procedure to divide it wasn't nice in the moment but the recovery was no problem at all and the difference to feeding was instantaneous.

I hope you manage to work out what is going on. Have you spoken to the HV about your anxiety as well? I'm not saying that to minimise your concerns but just to make sure you're also looking after yourself.

@mumofbun
I have been referred by the health visitor to a parent and baby well being service which provide support it's similar to talking therapy. To be honest with you since my daughter has been born and all the issues going on I have been really absorbed trying to get her help via the NHS that I haven't at all looked after my mental health and you are right I have reached a point that I mentally tired with everything going on it's hard because every feeding session is like a repeat cycle all the time.
Someone mentioned earlier in one of the posts to be straight with the health professionals as they might see me as an over anxious mum. I have put my emotions aside when talking to the gp, but you reach a point where no one is listening to your concerns or taking them seriously the doctors are saying if she drops from the percentile charts for her weight and has reduced wet nappies we will take it from there, but why should you leave this to that point. Just getting the referral to paediatrics has been a mission and I am not sure if the gp has sent this as urgent or not as waiting times for an initial appointment are very long. Me and husband have some savings so most likely consider private route someone mentioned a private gastro doctor for children.

Is there a reason your DH doesn’t feed the baby?

Just my opinion based on having had babies with CMPA as well as ones who didn’t have it, but this doesn’t sound to me like an allergy, I would guess either bad reflux or she’s swallowing too much air due to an issue like tongue, cheek, or lip ties, which can cause a great deal of tummy upset. Typically with CMPA the pain is not while they’re eating. I’m sorry you’re dealing with this. Everything is so worrying when it’s your first! I even called my mother at 3am when my first baby vomited for the first time because I had no frame of reference for what was normal.
I do think those explosive poos nonstop for the first 4-6 months regardless of whether they have an allergy or not is pretty standard, and they do tend to sound wheezy especially at night because their nasal passages are so tiny…but you know your baby best and it never hurts to push to rule things out just for peace of mind!

Husband said he is to scared as when he sees her cough during feeds and then choking so he has never tried. My mum use to feed my daughter. We live very close walking distance it's like 15-20 mins walk to my mums place. She has gone on holiday, will be back first week of February.
Husband looks after baby after feeds so if I need to have a bath, change my clothes and eat. However, all the looking after, changing and feeding I am doing this. Husband has been looking after our older daughter.

@Bighugs88 so on one hand he says she is fine but then refuses to feed her because of her symptoms

As a mum of a CMPA baby, I know how frustrating it can be to have your concerns dismissed. If you suspect reflux, it is worth trying the gaviscon as a first step and I would also recommend reducing times between feeds. With reflux, it is recommended to keeping baby upright for 20 minutes post feed too- so hard at 4 in the morning and when you are exhausted but it can help a little. Also, whilst you wait on paediatrics, you could try changing your baby to a partially hydrolysed formula, usually called ‘comfort’ milks as the proteins are more broken down and digestible for baby. It won’t solve a significant CMPA but at least you can tell the doctors you tried it before seeking the hypoallergenic formula.

My DD has CMPA and her symptoms were very similar to what you’re describing. We had the gaviscon - helped a bit but obviously didn’t address the actual problem. Took me ages to get her referred to specialist as GP dismissed me as an anxious new mother. In the end it was an a&e visit for a bumped head that started it - the a&e doctor told my GP to make the referral, literally my GP rolled hi eyes as he did it.

well - turned out I was right….. and she was given a prescription formula called Neocate, literally her symptoms cleared up in a couple of days.

we also had tried soya formula - unfortunately also was intolerant to that!

deffo seek private care from a paediatrician, if you go on Bupa website (or whatever private hospitals you have locally, we have Bupa, Nuffield and Spire) you can search for the specialism you’re after (not allergy, deffo paediatrics)

your husband needs to step up. Scared indeed!

My first baby had CMPA and GERD (internal reflux where they reswallow the acid but it hurts them) - at 2 months old the symptoms appeared and when I swapped to Nutramigen 1 (you can buy it quite easily without a prescription online) and gave them omeprazole (remember the omeprazole needs to go into an empty stomach, i had big syringes and diluted it in the syringe with a tiny amount of diluted apple juice) and it fixed things over a couple of weeks. My second started to get gassy (no GERD signs) at about 1 month and I swapped to Hipp's Comfort formula (available on ocado) which breaks down the milk proteins almost as much as the special medical grade one. If you think she has CMPA why not just swap to that and see if it helps. With both babies I did the milk ladder to take them back on to dairy at about 8 months with no issues. CMPA is super common and its easy to find out if there is an issue by just changing their formula (you may have to do half old formula/half new formula for a bit as the breaking down of the milk protein makes the formula taste worse).

To be clear, to me I am not a doctor but from what you've described it sounds like pretty classic CMPA (loads of gas, gastric discomfort, unusually explosive poo and not taking a feed easily) and GERD (the swallowing down the acid is what you are hearing and that causes them pain) so I'd swap formulas and use the prescription for omeprazole if you have it (its much more effective for GERD than Gaviscon - i think gaviscon is more for external reflux).

If you suspect CMPA and she's exclusively formula fed then that's quite a simple swap to a CMPA friendly formula - you don't really need a diagnosis to do it?

My DD also has a mild CMPA but was exclusively BF for the first 6 months so cutting milk out of my own diet was tougher than just swapping tins? Things got harder when she was weaning as a lot of toddler favourites are dairy based (e.g. cheese, butter, yogurt etc)

It's really tough trying to figure out what works but try some CMPA friendly formula (like Neocate) and see how she does?

If you are in South London, make an appointment to see Katherine Fisher in Addiscombe. She has a tongue tie private practice and used to run the King's tongue tie service in her NHS career. If there is a tongue tie, she will find it! Its about £50 for an initial consultation.
https://katherinefisher.co.uk/the-london-tongue-tie-clinic-page/

I also recommend trying the infant gaviscon. Ive had two DDs with bad reflux and it did make a big difference for us although im aware it doesnt work for everyone. We used half the dose that the GP recommended, which didnt cause any constipation but did settle the reflux.

For the bottle feeding, its also worth asking if there is a different service to be referred to rather than into paeds. DD2 had a 90% TT which had some post division complications. We ended up combi feeding but her bottle feeding was really dreadful. We were referred to the Speech and Language Feeding team, which id never even heard of, but were a team who look at the mechanics of the tongue and swallowing. The HV referred us. They did an assessed feed and recommended some different bottle teats and feeding techniques. You could also look at if your hospital has a "blue sky clinic". Its like a half way between GP and paeds and often doesn't have as long waiting times as things are dealt with more quickly.

Good luck - its so stressful trying to deal with feeding issues.

Where do you live?

I’m a MATERNITY NURSE so I should be able to recommend A tongue tie consultant local to you,

neil shah or MIKE THOMPSON are both good consultants in London