Possible cmpa?? Help needed

[Mum2be0523]

Hi everyone im is desperate need of some advice. Im at my wits-end. Newborn is currently 4 weeks old and suffering with the following. Iv been back and forth to gp and HV numerous times. Been advised reflux with colic. Here are the following symptoms and issues nothing is working for us but im wondering if he has a milk allergy. Perhaps very mild at least. It worst at night im absolutely exhausted as my poor little boy just squirms and grunts for the whole night. The grunting is absolutely unbearable to the point you cant even get a minute of sleep im currently doing a rota with my mum and mil to help out just to have some sort of sleep. It strange because I do no different in the day and he will lie down in day quite peacefully for hours but as soon as PM comes the grunting and squirming is on about level like he is so uncomfortable he doesnt want to be led down ( I already have cot tilted and spend I dont know how long with him upright on shoulders etc). I don’t understand why this happens to bad at night but you have genuinely not heard noises and grunting like it. However once you get him up and hold him this completely stops yet put him down (again after a good while) and this starts immediately. He can be solid sleeping but the second he goes down it starts. Someone mentioned its cause the gases etc have built up over the course of the day but I just dont know how to make this stop iv tried everything

he is bottle fed on dr brown bottles on c&g first milk

-he is very refluxy ie you can see and hear the liquid coming back into his mouth

• hiccups and coughing during feed or if you lie him down (again not immediately after hiccups can occur even 1 hour after a feed where he has even been sat totally up right. Its frustrating not being able to change a nappy if needed im doing these before a feed as you dare lie him down not long after for a change (can be difficult if bowels have opened)
• he doesnt vomit frequently maybe once a day or every other this can be not much at all or to a projectile vommit and tends to be no warning
• very constipated currently prescribed lactalus and this is the only thing helping him go to the toilet. Bowels are now loose but have been a solid tiny pebble. The increased bowel movements have done nothing to settle Him which I thought may be half the problem and why he’s uncomfortable
• very unsettled baby not crying all the time but uncomfortable and figity.
• takes bottles ok but 1 or 2 bottles he can be figity with ie bottle in and out of mouth and looks uncomfortable tends to be more evening time
• 7pm until 11pm screams in pain. Uncontrollably not stop for hours. Unable to sleep and closes eyes for 1 minute or so before hes back awake crying. This happens every night without fail and is exhausting
• wanting to feed more in evening time and less time in between bottles
• Iv given infacol and gripe water with no success
• gaviscon caused constipation so stopped
• Presribed omeprazol and made no difference
• moved to hipp organic and did nothing then projectile vomitted every feed so stopped
• Then moved to c&g anti reflux milk did nothing for symptoms but less sick I suppose . Gp has told me to go back to first milk
• cot is tilted. Im also sitting him in chair and upright as much as possible. Up right for 30 mins plus sometimes an hour or so after feeding
• i try winding to my hearts content and he does burp but sometimes nothing at all
• can be quite sniffly sounding
• nappies have a weird smell to them but are normal in colour

as I have said nothing I have tried is working and symptoms still persist. I can get over the day if I could just do something with this night time issue. i really really don’t get what happens with this grunting through the night. This is why im querying a possible milk allergy or intolerance. I appreciate there is not continual vomiting or diarrhoea or rash but does this matter? Any help or advice is really appreciated . Today GP fobbed me off and said he doesn’t have reflux its his sphincter not developed and then contradicted herself by saying the acid is rising up in the next breath so im totally at a loss ahe said definitely not an allergy . I feel like just turning up to a&e to see a paediatrician as this or something is just not right and I just don’t know how to keep going

thanks is advance for any responses

How do you feel about just buying the (expdnsive) non cows milk formula and try that? That's what I did while combi feeding and she was diagnosed with several allergies including CMPA months later. I'm not in the UK but use Kabrita, which is based on goats milk. I did combi feeding so if you're only formula feeding then I don't know if you need to switch more gradually or can just try it. Other people on here will know.

Take notes of his symptoms and go back to the doctors for a referral. They’ve prescribed gaviscon and omez so they must believe something is up?

that’s how I got my Ds’s silent reflux dealt with - literally took me three visit once a week but I couldn’t give up! His symptoms sounded very similar to yours. However in the end, the medication only partly helped. I also had to work on him getting enough sleep because he was getting so tired from being in pain, that his overtired symptoms looked like reflux. I lost a lot of weight as spent most of my days out walking with him in a sling to get him to sleep.

I found taking a crib sheet of notes gave me a script to talk to the doctors - I otherwise got too tired and emotional and they didn’t take me seriously.

I had to give up the idea of a textbook baby, and just took the easiest road of sleep in a sling in the day. He was propped up in a cot at night and I put him on his side. As soon as he could he was sitting upright so I wonder if that was because of the discomfort.

My LO has cmpa & her first 5 months were literally hell. She cried all hours of all day & would refuse to eat (only ever fed well if she was dream fed).
She had severe reflux - to the point it was audible to paediatrics! She was suspected to have cmpa at 4 weeks old, however due to the reflux being so bad, cutting out dairy did absolutely nothing. At 16 weeks we were sent to paediatrics where it was finally clear that there was an allergy but that was only after having her on sma formula for 24 hours - this caused her to have blood in her nappies! (For context - up until that point she was exclusively breastfed)
My Lo had an awful rash all over her body & every nappy was filled with mucus.

When we switched to a dairy free diet & she was prescribed dairy free milk, the change in her was remarkable. Like a whole different baby.

It's worth a conversation with your gp & ask if you can have a prescription for 4 weeks to see if there's any change.
After the 4 weeks, you would then try your lo on dairy & if you have a reaction, you will have confirmation & a diagnosis.

I hope that helps. Good luck with everything - it's rough having such an unsettled baby & nothing worse than the symptoms just being fobbed off as colic ☹️

Have a look at paced feeding to help with the gas.

What you describe in the evenings (crying between set times, feeding more, unsettled etc) is most likely their witching hour and very common in newborns. Both mine did it. Nothing to be done about it, it's just newborn behaviour. It passes. By 3 months they will likely have grown out of it.

For mine I found it helped to have an afternoon nap when they did.

Eat before it kicks off.

Get settled on the sofa with a box set or book. With my eldest I'd either feed or give the dummy. With youngest she just cluster fed on me.

For bottle feeding just offer an oz at a time / dummy.

My LO has allergies and it does sound possible to be CMPA. It is well known to take multiple doc appointments to get diagnosed. How is LO skin? One of the only ways to diagnose it is to try milk free milk and see if it makes a difference. Ask to be prescribed it to trial it and get referred to a dietician.