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.

Reflux generally I find unless really mild. Gaviscon doesn’t work and just bungs baby up

omeprazole is then needed.

just seen live in London then def Neil shah

You do as doctor needs to prescribe cmpa milk

You can buy it online as well without a prescription

Yes at £35 ish a small tin. Most babies go through a large tin a week at that age so £70 a week

sure op @Bighugs88doesn’t have a spare £300 a month every month to pay for milk which she can get free for her baby if needs a cmpa formula

if cmpa then can take 4/6w for cows milk to be out of body so need to be on new milk for least a month to see if any improvement

You can buy it for £30 and OP is already paying for (the more expensive ready to feed) formula per month. If she was buying powdered formula it'd be possibly an additional £150 per month but it's likely less if she is already buying pre-mixed formula. She already said she is willing to pay for private/specialist so seems she may be able to afford it in the interim and use it as evidence for improvement in her LO.

Tbh if the current state is driving her to despair then it seems like a simple solution to me

Hello everyone
Thank you your support
I have an appointment this coming Monday at central London with a paediatric surgeon for consultation and to check for tongue tie. So I will know it's that or not. I spoke to a gentleman on the phone to get this booked it's with HCA healthcare UK the appointment is for this coming Monday 12th.
At least I will be able to exclude this factor

There are a lot of tongue tie symptoms there OP.

Doctors are not trained to assess for tongue tie so don’t ask them for their opinion as they are highly unlikely to be qualified to give it.

Google the “Association of Tongue Tie Practitioners”, pop in your postcode and it will bring up all your local qualified practitioners who you can go and see for an assessment. Most of them will be able to see you within a few days and it’s about £200 for an appointment (depending on where you live).

Hi OP, sorry to hear you are struggling so much. My own DD had some feeding issues at a similar age and this was largely caused by a severe tongue tie missed in the hospital AND by HVs. As a PP has said, we googled "Association of Tongue Tie Practitioners" and actually found someone locally who visited us the next day. Cost £250 but bottle feeding significantly improved once the tie was cut.That being said, some of the issues you mention (eg the coughing) do sound more like CMPA so it's good you're seeing a consultant for this aspect.

I have a strong feeling it might not be a tongue tie but it's good to get this checked by a professional for peace of mind. I can then discuss with the paediatric surgeon regarding her other issues if his expertise covers this area with regards to allergy. As my daughter's cough and congestion has been there since when she was 2 weeks old. It's not a viral infection etc which A&E kept saying as it's been 13 weeks that she will randomly have a dry cough and so if the cough happens during feeding then she will choke I have to remove the bottle and then she gets really upset and feeding her again is stressful for both of us. There is no prior warning or sign that she will cough, but due to this she feeds very fast it seems like she is wants to have enough milk otherwise the bottle is taken away from me

Is there any reason you are seeing a surgeon as opposed to an allergy consultant?

Hi OP, sorry to hear you are struggling. My doctors called me a paranoid first time mum when I went through this. I knew there was something wrong but every doctor, nurse, HV etc overruled me and strongly advised me not to remove allergens from my diet - I wish I hadn’t listened as all the allergies came out at weaning at 6 months and I ended up with post natal depression. Please ask your doctor to prescribe you with the non-dairy formula. It will need a thickener as it apparently isn’t very nice but the good thing about formula is that you don’t need to try and eliminate other allergens!
from experience of removing allergens through my milk, the nasal congestion took months to improve so it may take some time but it may be different as it isn’t in your milk.

good luck and if you need support just shout. My child has multiple allergies and I got zero support. X

Hi OP, sorry to hear you are struggling. My doctors called me a paranoid first time mum when I went through this. I knew there was something wrong but every doctor, nurse, HV etc overruled me and strongly advised me not to remove allergens from my diet - I wish I hadn’t listened as all the allergies came out at weaning at 6 months and I ended up with post natal depression. Please ask your doctor to prescribe you with the non-dairy formula. It will need a thickener as it apparently isn’t very nice but the good thing about formula is that you don’t need to try and eliminate other allergens!
from experience of removing allergens through my milk, the nasal congestion took months to improve so it may take some time but it may be different as it isn’t in your milk.

good luck and if you need support just shout. My child has multiple allergies and I got zero support. X

Hi OP, sorry to hear you are struggling. My doctors called me a paranoid first time mum when I went through this. I knew there was something wrong but every doctor, nurse, HV etc overruled me and strongly advised me not to remove allergens from my diet - I wish I hadn’t listened as all the allergies came out at weaning at 6 months and I ended up with post natal depression. Please ask your doctor to prescribe you with the non-dairy formula. It will need a thickener as it apparently isn’t very nice but the good thing about formula is that you don’t need to try and eliminate other allergens!
from experience of removing allergens through my milk, the nasal congestion took months to improve so it may take some time but it may be different as it isn’t in your milk.

good luck and if you need support just shout. My child has multiple allergies and I got zero support. X

Hi OP, sorry to hear you are struggling. My doctors called me a paranoid first time mum when I went through this. I knew there was something wrong but every doctor, nurse, HV etc overruled me and strongly advised me not to remove allergens from my diet - I wish I hadn’t listened as all the allergies came out at weaning at 6 months and I ended up with post natal depression. Please ask your doctor to prescribe you with the non-dairy formula. It will need a thickener as it apparently isn’t very nice but the good thing about formula is that you don’t need to try and eliminate other allergens!
from experience of removing allergens through my milk, the nasal congestion took months to improve so it may take some time but it may be different as it isn’t in your milk.

good luck and if you need support just shout. My child has multiple allergies and I got zero support. X

Hi OP, sorry to hear you are struggling. My doctors called me a paranoid first time mum when I went through this. I knew there was something wrong but every doctor, nurse, HV etc overruled me and strongly advised me not to remove allergens from my diet - I wish I hadn’t listened as all the allergies came out at weaning at 6 months and I ended up with post natal depression. Please ask your doctor to prescribe you with the non-dairy formula. It will need a thickener as it apparently isn’t very nice but the good thing about formula is that you don’t need to try and eliminate other allergens!
from experience of removing allergens through my milk, the nasal congestion took months to improve so it may take some time but it may be different as it isn’t in your milk.

good luck and if you need support just shout. My child has multiple allergies and I got zero support. X

Hi OP, sorry to hear you are struggling. My doctors called me a paranoid first time mum when I went through this. I knew there was something wrong but every doctor, nurse, HV etc overruled me and strongly advised me not to remove allergens from my diet - I wish I hadn’t listened as all the allergies came out at weaning at 6 months and I ended up with post natal depression. Please ask your doctor to prescribe you with the non-dairy formula. It will need a thickener as it apparently isn’t very nice but the good thing about formula is that you don’t need to try and eliminate other allergens!
from experience of removing allergens through my milk, the nasal congestion took months to improve so it may take some time but it may be different as it isn’t in your milk.

good luck and if you need support just shout. My child has multiple allergies and I got zero support. X

Great you have an appointment - who are you seeing or message me if don’t went to say on here

some paed specialist maynot be trained for tongue tie - be better to see a tongue tie person to rule it out

I’m trained in tongue tie an amazes me that Mw and hv aren’t so often I speak to parents who say their baby is trailing to feed /latch and their baby
has been checked and no tt.

I start With the family. Check babys mouth as I always do and find tt

the symptoms you mention def seem to lead towards cmpa /reflux so be good to have a professional opinion

and yes op could buy it but why should @Bighugs88/ it’s a costly weekly expense

It has been difficult to find a consultant that covers both tongue tie and allergies apart from a consultant mentioned earlier but their fee is very expensive. So will see pae surgeon to rule out tongue tie and then will see an allergy consultant I have come across KidsHealth online
Is there anyone who knows a consultant that covers both issues tongue tie and allergies and their consultation fee is reasonable

Please make sure this surgeon is on the actual register of Tongue Tie practitioners.

Only registered tongue tie practitioners can accurately diagnose or rule out a tongue tie. A restrictive tongue tie that impacts feeding cannot be diagnosed just by looking at a baby’s tongue, it is a very complex process that involves a thorough oral examination and extensive feeding assessment.

The register is a list (that members of the public can access) of appropriately trained professionals who have completed the specialist training that qualifies them to assess tongue function.

When considering professionals who do have the tongue tie qualification, it’s also very important you take into account the doctors experience and knowledge surrounding infant feeding (breast and bottle feeding) before choosing to see them.

As a previous poster said, you would not believe how many professionals will tell parents that their baby does, or doesn't have a tongue tie when they are not professionally qualified to do so.

Even if you are seeing an ENT surgeon, although they will have knowledge and experience of tongue ties, they are not specialists in Infant Feeding and just because they may not visually see something obviously wrong with your baby’s tongue, that doesn’t mean they are trained in how to assess if your baby’s tongue function is specifically affecting their ability to feed.

The only person you should consider seeing for this issue is a qualified tongue tie practitioner who has also had extensive training in infant feeding. Most tongue ties practitioners are Lactation Consultants, Midwives, Health Visitors and Infant Feeding Nurses who have then gone on to so additional training to become a Tongue Tie practitioner.

I don’t know how much you are paying for this consultation next week, but you’d be better off paying privately to see an independent tongue tie practitioner (Association of Tongue Tie Practitioner Website), and paying again to see a separate Consultant who specialises in allergies.

Thats far better than paying to see a generic Consultant who isn’t qualified/or a specialist in either area.

They are different ‘jobs’ as such so rare to find someone to can do both

far better to see 2 separate people

@LondonLady1980
I was able to book a consultation and assessment for tomorrow which will be a home visit and so have cancelled the appointment for Monday. I find a tongue tie specialist via the website you mentioned. She will hopefully weigh my daughter, see me feeding her and do a tongue tie assessment. She said she will then report this via a letter which I can then pass onto the gp to speed up the paediatric referral. She said I can show her pics that I gave saved on my phone regarding my daughter's bowel and videos. She says it seems like an allergy with reflux and feeding aversion going on

Reflux is often a symptom so need to find the cause

if it is the milk then hopefully will get better but some babies have reflux till they are one or even older

Fantastic!

Both of my sons had a tongue tie, and my second also had CMPA so I understand the upset and exhaustion that comes with it all with regards to feeling like you’re banging your head against a wall whilst watching your baby in distress. It’s awful. The best of luck tomorrow.