Miserable newborn

[hyub]

I'm just feeling completely broken by my 5 week old. For the last 3 weeks he has become gradually more fussy to the stage where he is basically always whinging or screaming if awake.

I feel like I can't keep going on like this, I am physically tired but emotionally wrecked from his crying/trauma.

(He is formula fed. Has symptoms of reflux and an eczema type rash on his face which makes me suspicious of CMPA. GP only given gaviscon so far which is doing sweet FA).

I just need to hear stories about it getting better, please?

Thank you

Op I used kendamil with 3 of my children. Plus infacol before a feed and Dentinox drop in their milk every second feed. It takes a good few weeks to see any impact and your baby's is only 5 weeks old so you need to be consistent with whatever your trying.

Just to add with all 3 of my children I also though they had all these things but they didn't at all I think sometimes it's not talking about how much baby's actually struggle with wind and reflux they are adjusting and it takes time, my youngest is 2 months now and she's settled really well the last 2 weeks just doing the above and keeping them upright loads.

Oh my OP this was me and my baby a few weeks ago.
From what you describe it's exactly what my wee boy had. It's CMPA. Best thing to do is call your health visitor urgently and tell them that nothing is working. There is actually a pathway that needs to be followed and sound like your wee one has been failed in it.

Demand even just 1 400g tin of aptamil pepti to try. If it is cmpa you will know within 48 hours, you will have a different baby. The milk is very expensive so possibly why doctors are reluctant to prescribe it. Baby may still have reflux a little but that's where carobel can be used. (Use size 1 teat with aptimil pepti as its quite thin but if carobel is added, vary flow for newborn if tommee tippee bottles, I learned this the hard way lol)

If the doctors won't give a prescription, and you can afford it, order a tin online to try your baby on. Video babys progress before/after and take it in to your own hands and make them listen.

Really sorry for the long post, I read this and really feel for you both, people don't get how worrying and stressful this can be on top of postpartum. Wish you luck 💐

Thank you so much. It feels so validating to be heard.
I was crying to DH today saying 'how will this baby ever have a first smile if he screams every second he's awake'.

Saw the HV a today, weight gain is good.
Discussed possible CMPA and she agreed is a definite possibility and reasonable to ask GP to prescribe a trial.
So tomorrow will get onto the GP (usually get seen the same day).
Thanks again for advice

facial eczema is getting worse and rash spreading down the chest too.

CMPA is often dismissed by GPs. However there are NICE guidelines regarding trials. If gp outright refuses ask them to follow the nice guidelines. This at least means they have to read and check them so may mean they will do the 2 week trial.

allergy U.K. is helpful with symptoms you may not even have thought are CMPA. One of mine was wheezing like they had a blocked nose all the time. They’d arch their back ten mins after a feed having projectile vomited 5 mins after. Never slept well in the day as they were “jumpy” but did sleep at night and gained weight. Not all CMPA babies lose weight.

in my opinion medicines for reflux shouldn’t be given until CMPA checked but that’s a personal thought on it as sorting the milk often sorts out the other symptoms. The reflux meds made mine worse and kept them worse, it was only when we couldn’t get hold of it and we tried without we realised this.

hope you get sorted

Thank you. I will mention all this!
If they refuse I will probably just buy a tin. Any suggestions for the most accepted first line? (No point trying amino acid I'm guessing as the GP wouldn't continue the prescription)

With the eczema spreading I would say that's a definite sign of CMPA.
Glad your HV listened to you. Good luck at your appointment tomorrow.
Just to let you know drs will often start on the least broken down of formulas. Mine were on aptamil pepti and cow & gate pepti junior at first which didn't work, then Nutramigen then eventually Neocate.
I remember how low I felt back then and how difficult I found it dealing with such an unhappy baby covered in eczema, projectile vomiting with terrible wind all the time I couldn't wait to go back to work.
My eldest is nearly 9 now and honestly she is a lovely girl with no sign now of a dairy allergy. It does get better I promise. If it is CMPA you will start to see symptoms improve very quickly.
Sorry for rambling typing whilst at work!

Thank you
Funny you say that, I was literally considering how early I can go back to work a few days ago 😂 fingers crossed things get better and I don't want to anymore

We had aptamil pepti first rash started to disappear for about two days much better generally but about 4 days after rash was returning (reflux didn’t stop but wasn’t as projectile as in not the whole feed) Tried nutramigen 1 was better for about a week or two then rash came back again but continued for about a month with severe reflux. Finally had nutramigen puramino and that was the one to completely sort it no rash, reflux and a happy baby after about a month or so but improvements each day. (I think it was a while ago!)I was lucky and had a great gp who listened to me. However I believe now nice guidelines mean you must trial for 2 weeks then reintroduce milk based formula to see if symptoms return. Only if they do before will prescribe until 1 I believe.
unfortunately for mine they still have an allergy but not it’s mainly eczema rather than gastro issues now but they’re mainly happy not to have stuff with milk in even tho older sibling does.

good luck tomorrow and I really hope you get a good GP.

Hi all.

So I saw a different GP today (very experienced partner) who said the below (in this order):

• buy c&g comfort milk, it will help dairy allergy
• the nhs doesn't fund trials of cmpa milk, buy aptimel pepti OTC
• the nhs only really prescribes milk if there is failure to thrive
• her children all cried and it's part of having babies
• babies don't tolerate nutramigen or neocate because of the taste
• these milks are a huge cost to the nhs

When I made it clear I wanted a trial of cmpa milk it became clear she didn't know what to prescribe and asked me to go down and wait at the pharmacy while she looked up what to prescribe.

Long story short, I've got 4 tins of nutramigen.
Baby is screaming every waking moment so I am really praying for a response.

Honestly, reading this it's such a shame nothing has changed for new mums since I had my first 9 years ago. I remember being at the drs at one point almost every day saying something was wrong whilst the drs spoke to me like I was a paranoid first time mum.
With DD2 I was listened to because I'd been through it all before with DD1.
Comfort milk won't do a thing for CMPA . Tried it with DD2 before she was diagnosed and it just contains thickener to keep it down. Didn't stop CMPA symptoms and takes an age to drink.
Why would you not do a trial for a baby with CMPA where the formula is clearly making them ill. Why would you let it get to a point where they are failing to thrive? What nonsense.
I'm incensed on your behalf and have stopped work to write this.
You have done the right thing going with Nutramigen. It's probably somewhere on the middle of the scale in terms of CMPA milks.
The only thing I would say the GP is right about is that the more broken down the formula the more horrible it tastes. The one thing you have on your side here is that your DS is so little so won't know any better and is more likely to take it.
With DD1 she just refused to drink it a) because of the taste and b) because she associated the bottle with making her feel I'll and we just weaned her as soon as we could and age 1 moved her onto alpro growing up milk.
I would recommend keeping a diary now of all of your DS's symptoms and every day from when he has Nutramigen. If he has CMPA you'll see an improvement very quickly and can use your diary as evidence to get it on prescription.
Hang in there- I'm sorry this is happening to you. Once the formula arrives and starts to work you'll hopefully have a very different baby soon

Sorry just seen you've got the Nutramigen. Good luck let us know how it goes!

Thank you, these messages are giving me little sparks of hope.
Maybe I'm wrong and it's not CMPA in DS's case, but CMPA is a real thing (8% formula fed babies!) causing tiny babies pain and I'm just so sad it's dismissed like it is.
He had his first nutramigen bottle- he took about 70ml quite nicely and then fussed- however this is relatively common for him anyway so I'm happy with that.

I would try without the Gaviscon for a bit, and get a dummy. My boy had severe reflux, even to the point of a brue event. But Gaviscon made him so ill!

We were going to go for the omeprozole type meds but the gps were arguing over it and thankfully we tried without it. It was hard work, babe continually upright or on a tilt, we had to protect the airway for weeks to allow it to heal and strengthen. But it worked.

If that doesn’t see any improvement after a week or two then I would demand a trial of non diary formula for CMPA.

@LemonSwan thank you. I wasn't sure which avenue but the eczema tipped me to try cmpa route.
Going to ditch the gaviscon (and then the lactulose) as wasn't helpful anyway.

Sorry me again. When can I expect to see some improvement?

We found the question of when can we expect to see improvement so frustrating. Some doctors said within a day or two and other doctors said it'll take at least six weeks to leave their system so you can't expect to see too much improvement before then. Does the formula you're using have soy in? We were told that you can't substitute soy for dairy because the protein strains are so similar that the baby will likely be allergic to both.

Nutramigen does have soy in it yes

@hyub improvement for us took a few days!

How's the LO getting on? Any change?

Hi OP. Have you taken your baby to see a cranial osteopath? When DD was born she seemed "angry" for want of a better word, and unsettled. She had a few sessions with the cranial osteopath and was so much happier.

I took him to cranial osteopath when he was 10 days. Didn't achieve much so I'm reluctant to go back...

No improvement yet. He is SO SAD the whole time. He's had 3x bottles of 70,70,90ml. He appears to tolerate the taste ok.

I'm not sure I'm making it right though as tiny clogs keep clogging the teet and upsetting him. I'm boiling the kettle, pouring into bottle and leaving to cool to room temp. Then adding powder and shaking when bottle needed...?

We were told that we would see an improvement within a couple of weeks but in reality once we were on Neocate it was a couple of days.
Be prepared if your DS has got CMPA that you might find that whilst his symptoms improve on Nutramigen they may not fully resolve and he may need an amino acid formula.

I don't think this is recommended but I followed what the children's hospital did and made them up first thing, let them cook and took them out of the fridge and heated up as required during the day.

I added the powder to hot water that hadn't long cooled rather than waiting for any length of time if that makes sense? That was following old advice but it worked for us. Don't know if that's any help but wishing you luck!