2yo boobmonster with allergies - how to cut down on bfing?

[MrFrumble]

Posting here for traffic...

DS is nearly 2. He's got CMPA and soy allergy, has reflux that isn't controlled, is a terrible sleeper so is usually sleep-deprived, and often seems to be in pain. He's an incredibly picky eater, gags on complex textures, and won't touch eggs, meat or fish. On days when allergy stuff is bad (eczema flaring up, reflux, hiccups, spluttering, unhappy little boy) he wants to feed about every 5 minutes. Nights like that he can really only sleep if held nearly upright, feeding in his sleep. It's all been like this since he was about 4 weeks old - for the first 7 months he also had severe bloody diarrhoea.

I do all night wakings because they're DS in pain. When he's not in pain he sleeps fine - maybe 4 wakes a night where he can be patted back to sleep quickly. When he's in pain he rarely sleeps longer than 20 minutes at a time, and will scream until he's sick if not bfed.

He is also pretty keen on bfing to escape social situations where he's unsettled. This is much more behaviourally based - i.e. he is much more distractable - but if I am distracting him I can't participate in social situations.

Unsurprisingly I am exhausted, and have no social life other than where I can talk to someone at my house while bfing an enormous wiggly toddler. We can't find a nursery or childminder who will take a child with complex allergies and sleep problems. While I want to help DS with pain, allergies and sleep, I desperately want my body back. My mental health is cracking up and on recent nights where DS has fed literally all night I have resorted to scratching my face/arms until they bleed, while sitting there crying, because I am so tired.

Anyone got any suggestions on how we might do less breastfeeding?

We're not in the UK. We have a referral to an immunologist for "some time next year". No family around, friends all have their own kids, DH works long hours.

Hoping someone will come along and give helpful advice. But keep strong you are doing a great job.

Thanks. Honestly a lot of the time I feel like I'm doing a terrible job. I'm often too tired to engage properly and have a resting "God I'm tired and I feel awful" face. The only good thing about all the bfing is that DS is now recognizing a lot of print words and has a huge vocab, because I've spent so long reading to him while bfing.

You poor thing. That sounds totally exhausting. Have you thought about night weaning? Kellymom has some good suggestions https://kellymom.com/ages/weaning/wean-how/weaning-night/
Have to admit I went cold turkey on night feeds at about 1 but continued feeding for quite a while after. It was really hard the first few nights but she got used to it quite quickly. I don't have any experience of CMPA or allergies, but the other thing that jumped out from your post was reading to him during feeding. While this sounds really lovely, you could think about trying to make feeding as boring/functional as possible, and have reading/cuddles as an alternative.
Even if your DH works long hours if you are hurting yourself to get through the night that is very concerning and he should be supporting you more, especially if you decide to stop/cut down night feeds.

Thanks for the thoughts there - tried night weaning many times but have given up as he is essentially night weaned when well and totally not weaned when not well. So the focus really needs to be on sorting the allergies, and the food.

I read to him during the day when bfing - at night I am trying to doze while holding him.

But yes having reading/cuddles as an alternative is a good idea.

There's a really helpful group on Facebook called Breastfeeding Older Babies and Beyond.

My goodness you poor thing, that sounds so hard for both of you

I too am chronically, chronically sleep deprived and scratch myself when desperate. It's horrible. In my case it's having an infant who NEVER SLEEPS and won't take a bottle.

I think making feeding boring and functional is a really good idea. If you can't find a childminder could you get a nanny? Even just part time? Someone may be willing to provide care in your home with you around - which would give you a break.

How well off are you, could you pay to go private to see a HCP sooner? It's shocking you have to wait so long for a child with severe atopic disease. Does he have asthma as well or have you escaped that so far? What treatment is he getting for the eczema, our consultant was very much of the view that DS would continue to develop allergies unless we got the eczema under control.

Does your DH know you are self harming? He needs to cut back his hours and help more at home, both you and your DS are ill. You need to see a doctor for yourself and get some practical help so you can rest more. Sounds like you could have some PND as well, completely to be expected when you are so isolated and have severe issues to deal with (I've heard PND described as a rational response to an unbearable situation and I think there's a lot of truth in that).

What kind of support are you getting medically OP? Bloody diarrhea in a baby sounds terrifying and very serious. It is so awful that you are both so exhausted, sleep-deprived and suffering. Is there anyone such as your partner who can give you a night off? It sounds like you need a solid night at a hotel without DS just to get some serious sleep or you are going to fall apart.

Hi ,
I just want to give you these first💐

My cousins little one had CMPA...he is now nearly 3 in Feb , he has grown out of it, the only advice I can simply offer you is when weaning him, buy him "free from" products, now I know in the uk most stores have a good selection now than before, hopefully were you live they have a good selection, as this really helped my cousins LO and she was getting more good days feeding him free from

Just to clarify

Bloody diarrhoea is probably a thing called FPIAP (food protein induced allergic proctocolitis) and is normally not regarded as very serious as it typically goes away and all is well. But while it has gone away it seems to have been replaced by serious reflux or eosinophilic oesophagitis.

Can't find any immunologists who will see us sooner - severe shortage. Looking into possibilities in nearby countries...

First of all, massive well done to you. My 2 yr old is still BFing and is a poor sleeper but the desc of what you're going through sounds extremely tough. My DD feeds all through the night as she wakes very frequently and is hysterical without BFing to resettle.

She also eats very little food as shes always struggled with texture and amount in her mouth. If i added allergies into the mix she'd eat less than a sparrow and the stress of finding foods to offer her would be unreal. It sounds very very hard for you both.

One thing I have recently realised is that my DD has signs of sleep apnea according to online info and this is likely why she is such a poor sleeper. Then along with the sleep apnea my child presents with lip, tongue and buccal ties. Particularly the tongue tie affects her speech, ability to eat food (as limits the movement around her mouth) and greatly affects sleep as her tongue sits in the wrong position. She regularly spits out food as she can't cope with the size (even if a small amount) or if its not really easy to break down.

I am now going to arrange for her to see a consultant about correcting it (her lip tie has also caused tooth decay on her top front teeth).

It would be worth considering a tongue tie in your son as if he has one it can cause very severe issues with sleep and food which then impacts on their behaviour as like you say they're tired a lot.

I realise ties could have nothing to do with your sons situation but it's worth considering in case it helps.

Big hug to you, you're doing amazingly as to feel like you do but still to seek help and express honestly how you feel is a big thing

Does he sleep.in a pushchair? My ds with reflux often slept upright in his pushchair beside my bed.
I agree with the comment above that you should make breastfeeding less fun. Make story time another time when you are not feeding.l

I hadon't a child with lots of allergies, eczema and severe sleep issues. Do you want to PM me? I may be able to put you in touch with someone remotely who might be able to help.

Another cmpa mum here! The thing that strikes me from your first post is that you obviously haven't gotten the allergies completely under control yet. Are you getting any support at all in what "hidden milk" words you have to look out for in foods you are eating as milk proteins can be passed on through your breast milk. I had to take all the things my son was allergic to out of my diet before he calmed down,slept for more than five seconds,and stopped throwing up after every feed. Please pm me if you need to ask questions or a hand hold,I have stood in your shoes and it's a bloody nightmare

I agree with Barbie girl. We had to exclude things that weren't being tested for and we not showing up on the skin prick/blood tests before we got things under control. There were also 'environmental' things that would make him throw up, itch, wheeze, scratch and generally be irritated. (his bed, his mattress, cleaning products, plants, particular essential oils, some types of plastic toys.. I believe that his system was so much under stress that he reacted to things that most people are fine with but were not showing up on the blood test because we didn't know what we were looking for.

I saw an amazing immunologist in Switzerland who said that taking all gluten and gluten-like grains out as well as all dairy is crucial for any atopic type presentation and any allergy. Healing with the right types of essential fatty acids and removing heavy metal toxicity (for us it was my thimerosol load from travel vaccines and mercury load from amalgam fillings that had been passed to DS in vitro as well as very poor gut bacteria passed to him from me, this has taken a long time to address and is an ongoing battle). He does however, now eat a fairly normal diet, has fewer reactions and sleeps. He is 9!!

Thanks everyone.

I already have cut out all possible sources of dairy and soy, so we eat almost no processed food and nearly everything is made from scratch.

I suspect he is also allergic to something we haven't eliminated - wheat, peanut, oats all possible. I cut them all out when he was EBF and the FPIAP (bloody diarrhoea) continued, so unsure about them as culprits. Eggs seem to have no effect. Waiting fir coeliac testing too.

This guy is meant to be amazing (no direct experience myself) www.draron.com/

Skin prick testing only works for Type I allergy though? Most delayed type reactions like eczema, allergy-related reflux aren't type I...

I went through similar, my ds is allergic to so many food, and always in pain, and had diarrhea all the time. He was covered in bloody eczema since 1 week old.

At 8 month, I was instructed to cut out everything he was allergic to in my diet, which included daily, eggs, wheat and many more. And it made incredible difference in his condition, especially his eczema.

sorry misread - what type of blood tests - specific IgE? RAST? or something else?

Thanks to everyone here, very much. I will come back later today, and will also PM those kind souls who offered it :-)

Also, by cutting out somethings, he stopped reacting to others.. which ones were linked and which ones just stopped because we cut them out for a short time we will never figure out. When we got his gut under control the skin reactions and sensitivity got better.

I just realised you are not in UK. I don't know how it works in your country.

My ds has prick test every year, and also sometimes had blood test done. The Dr. says she can test 120+ allergen from one single blood test.
Also had biopsy done by gastroenterologist, and tested for Celiac Disease, and intolerance for dairy, all came negative. All done around when ds was 2/3 years old.

We are going through immunotherapy at the moment to improve his immunity.

When I gave up all he was allergic to while I was breastfeeding, his bloody/explosive diarrhea stopped and skin condition has improved massively.

I think the key is to find out what he is allergic to. Then you can avoid most of the things that's affecting him.