Help with possible CMPI/CMPA - ebf 5mo.

[ilovetosleep]

Hi

First post on the allergies board and I'm sorry if it's long, I've been round and round in circles the last couple of months and I think I should give as much detail as poss.

He has shown signs of reflux since about 8 weeks, eg back arching, coughing and wet burps, a look of distaste in his mouth, general unhappiness and lots of grunting and complaining. We haven't had prolonged periods of hysterical screaming which I tend to think of when I think of reflux babies. Just general misery and grumpiness.

Our main problem is that he resists feeds. He's been on/off nursing strike for 2 months and will only feeds in a dark bedroom before or after a nap. With white noise. Lying down. So if we're out for the day, no feeds at all. And he feeds all through the night, every night! It started off with screaming at the breast and back arching, but now he just arches away from me and gets agitated when I push it. Sometimes he latches on for sone or two sucks before looking away with that look of disgust in his mouth. He's been on the maximum dose of ranitidine for about a month now. Some success with cranial osteo but always short lived. He is a terrible sleeper, the max he'll go overnight is 3 hours but its usually more like 1. I am in the habit of just picking him up and feeding him at the slightest squeak because he doesn't feed well at all during the day, but I don't know if this is exacerbating the problem. The whole feeding thing is totally stressing me out.

Anyway, onto dairy. I was recommended by our osteo to try cutting out dairy. I also met one or two bf mums of cmp intolerant babies who told me that their babies went on prolonged nursing strikes and only really fed at night. I also read somewhere that babies can sense/taste/smell allergens and I wondered about that look of disgust he has...

So I thought I'd been dairy free for a month. I wasn't totally convinced by the cmpi though so I didn't really check every label, and then discovered that the toast I 'd been eating every morning had milk powder in, as did some crisps and various other random things I'd consumed. Over that month we'd had short spells of normal feeding and better sleeping. Then I decided to to a test, with some bread and butter. Just one slice. That night he fed every 2 hrs as normal until 3am when he woke, completely wired, screechy and unsettleable. Not screaming in pain but writhing around in discomfort, but it was as if he'd eaten a load of e numbers - totally wired and unable to relax. Next day I ate a piece of cake. Same thing happened that night. I've been dairy free ever since and that hasn't happened again, apart from one night when I was cooked for by someone who found the whole dairy free thing entirely impossible to understand and possibly used butter - again he woke wired and hyper at 3 am.

Is there a possibility this could be caused by an allergy/intolerance? It seems like a bizarre reaction but too much of a coincidence?

So I've been totally for sure dairy free for about a week, and I haven't noticed any major improvement. Is there an element of degree - ie. is having little dairy better than having lots, or is it all or nothing?

I'm really worried about weaning. Had really wanted to to BLW but too scared now. I want to know for sure that he is CMPI/A. Can they test? Will they test before he's on solids? I'm afraid that if he doesn't like bf then he won't like food either. Or that he'll like food too much and never bf again. Or that he'll have multiple allergies. DS1 was a dream to feed (til he was 2) and wean and he's an amazing eater. I guess the prospect of an allergic child scares me - I don't know where to start.

I knew this would be a long thread. I hope you got through it and can offer some advice.

Thanks in advance.

Hi
My baby is EBF and is nearly 5months and is CMPA, SR and GOR. We had an absolutely horrendous time until I cut dairy from my diet. There was a little improvement but the real improvement happened when I cut soya and egg too and from 8wks old he has been a different baby! Soooo happy and settled. He used to scream all day in complete pain, back arch, mucousy poos, vomit constantly etc etc.
it took a good 2 weeks of strict diet elimination before We noticed an improvement.
I also wanted to do BLW but at the moment we are doing purees as I am also nervous about him reacting to anything.
I have not challenged him either as we see a dietician (referred through our health visitor) regularly and i follow her advice so sticking to DF/SF/EF for time being.
Hopefully we can challenge him soon and it is something he will grow out of.
Have you spoken to your HV and asked for dietician referral?
Regarding sleep, would your baby take a bottle to allow you to get some sleep or a rest at least?
Id preserve with the diet, give it a few weeks to clear out your system and keep a food diary so you can see when baby reacts and what you have eaten that day. Xx

Ds was dairy intolerant. He was ebf and I weaned mainly using purees with lots of finger food - veg, fruit, bread sticks, humus, pasta, meat etc. I never really understood the blw thing, I have to confess.

At 12 months he was prescribed neocate by the dietitian which he likes and I continued to feed him until just before he turned 2.

It was only in the last year - and he's just coming up to 3 - we have really challenged him - with a lot of support from nursery. The staff are far happier to try him on stuff than I am so we went from the occasional accidental bit of dairy, to trying something every week and now he's fine with cooked dairy in cakes and things although we still tend to use oat milk for sauces and things when we're cooking for all of us.

We have given him pizza but he doesn't like it and sometimes says it's because it makes his tummy feel yucky but I don't know if that's because it does or because we've told him it will. He is keen to try cheese but mostly doesn't like it so we don't push it.

good luck!

Your story is very similar to mine. My daughter went through a few months of being a terrible breastfeeding and becoming extremely upset about it at times - it is very distressing. Cutting out dairy helped and cutting out egg made it all better. We then went on to bf until she was 15 months happily :). We confirmed her dairy allergy when we noticed that she would get a rash when my husband would kiss her forehead after drinking his coffee with milk. Then she accidentally had a tiny bit of his egg at around 7 months and vomited it straight across the room! Health visitor referred us to a pediatric dietician which was very helpful with weaning. She had a skin prick at 12 months and it confirmed those allergies and some others. She was prescribed nutramigen then and we supplemented with it from 1 year as I was back at work and she continued to have it until 2 years when we weaned onto coconut milk. It's good to introduce hypoallergenic formula sooner rather than later as many babies refuse to drink it as its frankly disgusting.
Dealing with allergies can be really distressing and cause a lot of anxiety for mum. Try not to stress to much about weaning - in the end my daughter has an excellent diet and eats tons of veggies, meat, grains and fruit - much more than her peers who seem to have cheese and yogurt with every meal. And there are lots of treats you can find for them that don't have the allergens in. There is a useful cmpa group on facebook where people post tons of ideas. I used to really stress but over time I have relaxed about it a lot. The truth is that anaphylaxis is extremely rare and if your child does have allergies his reactions will likely be mild - rash, itchiness, upset tummy etc. we have piriton on hand for this and it sorts her right out. Definitely push to have it confirmed as its stressful not to know and then just move forward. Lots of good advice on here.