In need of desperate help/advice. At breaking point.

[EllGriff]

Hi all,

Im hoping someone on here has advice for us. Our 13 week old has always been a struggle to feed, but recently things are getting a lot worse.

DS was brilliant at feeding for first 3/4 weeks. Then he started to cry on bottles and arching his back. He was diagnosed with reflux, although he’s not always sick, more heartburn pain. So he is now on infant gaviscon although that makes him constipated so the doctor gave us lactulose for whenever he isn’t pooing (which is always) and whenever he does it’s like clay, sometimes pebbles and he screams in pain when he is pooping. We try to give him cooled boiled water in the day to try and help him which it does a little. He had a tongue tie which was cut at 9 weeks. He improved a little but not for long. Then we all caught covid a week later (me, husband and DS). Now we think he is teething (been about a week now). We changed his milk from aptamil to kendamil before we realised he was teething as we could not get any milk down him. He was on that for 2 weeks until we switched back as he seemed worse. He would take an ounce then scream and scream. He was only having 5 oz in the day. But I was giving him a bit of water to stop him dehydrating. He is so happy in himself, he is such a smiley boy. He is active and very aware. He is developing quite fast.

We just cannot feed him without a screaming match. We tried different flow of the teats and tried changed the bottles/teats completely but it doesn’t work.

I’m so lost as to what to do, he just doesn’t seem to enjoy milk. He is putting on weight, he weighs 14.3 pounds. But he just doesn’t seem to be having much.

Thank you,
Ellie x

Could they have CMPA? See if you can get dairy free milk prescribed and try for a couple of weeks. Have they got any eczema? That's another symptom.

I also don't think you should be giving water.

Agree with Mummy2C. I'd have a read of this article on on CMPA by allergy uk.

Do the symptoms sound similar? Can you film a feed to show the GP?

Sorry posted too soon. Also agree that water shouldn't be given to young babies unless you are somewhere very hot.

I'd also add Dentinox to his bottles until you manage to get a milk suitable for babies with CMPA.

He’s been seen by a doctor who has checked him over and it’s never been suggested/brought up. He has no rashes and doesn’t have diarrhoea. He doesn’t often vomit, only if he guzzles his bottle too quick in middle of night.

It was the doctor who told us to give him water. Also told the health visitor I had been doing this and she didn’t say to stop.

I will definitely ring the doctor to get him tested. I have read the symptoms before for CMPA and he’s never had any other them.

Also again, doctor told us to give him water and also told the Health Visitor and she didn’t say to stop.

Have a feeding specialist coming over on Friday to watch him feed

Unfortunately GP's and HVs have very little, if any, training on feeding babies.

According to the NHS' own information "giving water to babies under 6 months is not recommended".

He also doesn't need to have a rash to be diagnosed with CMPA, I've got it and never had a rash. It might be that he's non-ige like me which can only be diagnosed with an elimination diet

Constipation is a symptom of cmpa. It can go either way. Mine had unbelievably frequent explosive nappies but I know people who have also had a cmpa diagnosis for their babies and constipation was their main symptom along with reflux.
It’s not ideal to give a baby under 6 months water. However again I also know people who have been given that advice from feeding specialists for really bad constipation. Always capped at 1-2 ounces of cooled boiled water though.
you could also try asking for movicol instead of lactulose to see if that makes a difference but whilst on gaviscon you are going to get constipation.
our baby become so constipated on gaviscon we took him off it all together as although he still had reflux he wasn’t actually in pain from it so the sick was more acceptable than the constipation.

GPs are well known for having little knowledge of CMPA. It can take multiple visits to get it recognised. It's not something they get tested for. All you can do is eliminate dairy for a few weeks. See what happens. Then try milk again. If symptoms come.back then you eliminate dairy from diet. You then need to be under a dietician for support.

He’s been on lactose free milk now for 4 days and haven’t seen an improvement in him. He has become so wriggly and hard to put down at night. He had 4 ounces at 5am this morning and has wanted nothing since. Managed to get 2 ounces down him that’s all. Saw the doctor and feeding specialist yesterday but they had nothing to suggest. He is a healthy weight on the 50th percentile. The feeding specialist told us to go with him and what he wants rather than thinking we need him to drink 4/5 ounces every 3/4 hours. She said as long as he is giving plenty of wet nappies then he should be fine. What do you think to her advice?

If he’s cmpa, lactose free milk won’t make a difference. Lactose free is for those who are intolerant to the lactose sugar. Cmpa is an allergy to the milk protein itself. If he has cmpa he needs prescription hypoallergenic or amino acid formula.
If he is 50th percentile I would really try not to worry and follow his lead. I stressed about my baby’s weight (born 75th dropped to 50th and finally settled at 25-30th). I was always concerned he never drank enough to the point he nearly developed a bottle aversion because I kept trying to feed him. He always put on weight and followed his percentile once on the right formula regardless of how little I thought he drank and I should have just let him drink what he wanted.