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Silent reflux, CMPA, terrible sleeper - 1yo HELP

(20 Posts)
Schwanengesang Fri 13-Oct-17 09:14:58

DS is nearly 1. He has been an absolutely terrible sleeper since about 2 months old. Has CMPA (type IV reaction, delayed, bloody diarrhoea from 4wks to 7 mo, now pretty much cleared up) but advice of allergy specialist is to feed him everything, including milk.

He is on omeprazole. Is there anything else we can do, particularly re sleep? He has slept on me,cluster feeding, most of most night since birth.I am exhausted. Sleep training has totally not worked at all, unsurprisingly.

Anyone? Anything?

try2hard Sat 14-Oct-17 19:40:50

Mine is/was similar. Now just over 2, sleep didn't get better until about 20 months, I didn't do anything apart from try to reduce night feeds - until then I'd fed on cue which meant every 2 hours in the night but I decided to try to not feed to sleep at around then and it really helped. I basically fed then read a brand new story book in her bed, which helped her forget she wasn't getting the milk. After a few weeks of that I moved the milk to a different room before bedtime and then finally a cup.

I don't actually think the sleep issues were her allergy though, I think it's just her, she still wakes 1-2 times a night but v quick to settle now and I stopped all bf at 2 years old.

Are you feeding cows milk? Because I would hold off, mine is still reacting to step 1 of the ladder and first sign of reaction is always sleep issues.

Schwanengesang Sun 15-Oct-17 02:28:42

Paed immunologist advice was to feed dairy as that leads to less long term allergy than not feeding dairy, in babies with mild CMPA.

He does seem to react though :-(

try2hard Sun 15-Oct-17 20:18:08

That goes against the MAP guidelines. Have you checked them? I wouldn't continue feeding dairy if it's causing reactions, particularly before/around 1. Continuing to feed it means that you could be irritating the gut constantly. I'd eliminate for at least 3 months, then assuming all symptoms have died down then start the milk ladder very very slowly.

No wonder you've been having issues if he's still consuming dairy

try2hard Sun 15-Oct-17 20:19:42

Oh and also join cmpa Facebook groups, lots of good advice on them

WaxyBean Sun 15-Oct-17 20:27:30

Advice has obv changed since my DS was diagnosed 8 years ago, but what worked for us when getting a diagnosis (at 8 months) was cutting out all allergens (have you had skin prick testing?) from his and my diet (as still bf). Sleep got so much better then.

Schwanengesang Sun 15-Oct-17 20:50:36

Thanks try2hard

If you read

you note "urgent referral to a paediatrician with an interest in allergy" - we have seen two paeds with interest in allergy and a paediatric immunologist. They each said that evidence shows less long term harm from feeding dairy in uncomplicated gastrointestinal non-IgE-mediated CMPA, than from avoiding dairy, and that yes this does contradict MAP guidelines. As do results of the EAT trial. Given the recent rate of change in immunology I am inclined to believe them. This does have the knock-on effect that DS will react, but the advice is that this is less of an issue than long-term milk protein allergy.

(I am definitely absolutely not someone inclined to see big pharma conspiracies round every corner. However, do you note any conflict of interest re MAP guidelines being developed and funded by the producers of elemental formula? or the recommendation in bold for elemental formula coming before talking about breastfeeding but no statement saying "actually fine to continue breastfeeding"?). I think MAP guidelines absolutely have a place, but may need rejigging as immunology develops. So in a child with faltering growth and enterocolitis then yes, milk ladder abolutely; but silent reflux, proctocolitis and appropriate growth ... maybe not, if family is highly atopic and kid is at high risk of long term allergy.

I did join the Fb group but found people on there to be very confused about how allergy worked.

I guess all we can do is keep going with small amounts of dairy (full fat, no added sugar, bio yoghurt), probiotics to help with gut issues, and ride out the sleep.

Thanks though for your input and apologies this is a bit dripfeedy - blame extreme sleep deprivation...

Schwanengesang Sun 15-Oct-17 20:58:10

Waxybean skin prick testing is irrelevant for non-IgE-mediated allergy.

I cut out all potential allergens from 2mo to 6mo, lived on rice, a few vegies, lamb (and lost 15kg in the process), while EBF. We achieved a single week without bloody diarrhoea, apparently at random. Immunologist told us DS was at very high risk of multiple long term food allergies the way I was going with food, so to start following EAT protocol, feed DS everything, and diarrhoea would clear up. It did, at 7mo.

try2hard Tue 17-Oct-17 15:01:45

My understanding was that the EAT studies are basically doing what the milk ladder does, once you've cleared it from your system (e.g. For 6 months). I've also seen an allergy specialist paediatrician and they've contradicted what you've been advised. It just seems a bit nuts to continue giving your child something that is clearly causing them issues, especially when the evidence shows that most grow out of it before 5 with an exclusion and gradual reintroduction approach.

Schwanengesang Wed 18-Oct-17 07:40:38

The difference is the age of introduction. Under 1 (around 6mo) seems to be critical for prevention of long term allergy. Milk ladder papers are 2007, 2010, 2011; EAT is 2016. Immunology is moving that quickly at the moment. Many consultants are not keeping up, let alone GPs.

Schwanengesang Wed 18-Oct-17 07:44:13

Also, most grow out of it with or without exclusion. However there are identifiable risk factors for long term food allergy, two being both highly atopic parents with multiple food allergies, and exclusion diets for mother and baby. Thus the advice being given to us, specifically (see above re exclusion diet).

Schwanengesang Wed 18-Oct-17 07:53:54

One point re: most growing out of it, with or without exclusion, is that Type IV allergic reactions in CMPA were first described in he early 1980s, but the symptoms were a recognised clinical entity long before that, but were not associated in the literature with cows' milk. So exclusion diets are a relatively recent way of dealing with Type IV CMPA.

Of course one then wonders who those kids who didn't have exclusion diets became - adults with less atopy but more IBS?

sentenceinterrupted Wed 18-Oct-17 09:27:55

Hi schwanengesang,
Not sure if it helps, but .... my history/thoughts....

Pre EAT study, I pulled all the multiple allergy foods out of my son's diet (he's now 5), including both IgE and non IgE. Please bear in mind though, that my GP was worse than useless (said that DS categorically couldn't have an allergy as i was breastfeeding and it doesn't go through breast milk), so I self taught about allergies (and later went private before transferring back to NHS). I didn't clue in to one of his non IgE allergies until he was 18 months old (wheat).... but his sleeping was v similar to your little one, and his eardrums were literally bursting every 3 weeks. I ended up taking it out of his diet.... but he was in a lot of pain on a regular basis, plus while he was putting on weight (a lot of weight; he was 90th centile), he was not growing (he got below 5th centile if i recall, but his dad is 6'3"!). He grew 2cm in the 2 months following taking wheat out of his diet.... and now he has caught up on the height curve (and dropped the weight curve). He has also "outgrown" all of his IgE allergies except treenuts and peanuts. He is eating all his non IgE, but his behaviour since reintroduction suggests that he still has some issues. I'm keeping them in his diet for now for the same reason as you.

My DC3 showed early signs of allergies. Literally at 2 weeks old, she was with me in the audience when the leap study (but not results) was presented to the medical practitioners at the allergy show in london. Results weren't given out (because they weren't allowed to before publication), but you could tell they went well by the way he presented. At 3 months old, i followed their protocol which i pulled off the website. We had a rocky few months but DD is now 2 and eats everything. Smaller than she "should" be, though.

I guess where i'm going with this is,
- what are the knock on effects that are happening with milk in the diet, and are you happy with them? (eg growth, sleep, pain, etc)
- having already 'early introduced' your DS to milk, do we know yet the potential effect of removing it from the diet again?
- Given it is non IgE mediated, what is the chance of it changing to IgE mediated (which is what you are really trying to avoid), if you take it out of his diet and reintroduce it later?
- EAT/LEAP etc studies are focused on IgE. How does the application of these results affect non IgE allergies?

If I were you (and I'm not)... I would:
- take milk out of the diet for 2 weeks and see what happens. 2 weeks off isn't going to change anything allergy wise. (I will mention that having NEVER slept through, my DS started sleeping through every single night from 2 days after we took wheat out of his diet, despite him eating very little wheat anyway).

- assuming it gets better, reintroduce milk, but only the bottom of the ladder and see what happens. I'd be hoping to be off the omeprazole.

- as it's a non IgE, if low levels of milk don't "work", then i'd be taking it out of his diet, or only introducing it occasionally. Your specialist is doing their best with the information that is available, but they are probably focused on not 'creating' an anaphylactic potential. I think that potential is low (mainly because it's non IgE), but that is totally a judgement call - it just hasn't been investigated enough. As a mum, i'd be looking at total quality of life for not just your son, but also for you.

Sorry, very long ... but i know what it's like to ask questions and not have anyone answer the q...

PS. after ds was diagnosed i realised i was probably allergic to milk and egg when i was younger; certainly wasn't taken out of my diet. middle aged now... i still say that milk makes me feel 'phlegmy / asthmatic' and the thought of a runny egg makes me want to vomit (even though i can eat it in cake mix etc no issue). But no atopic problems!

MrsPandaBear Wed 18-Oct-17 09:48:14

I'm a bit confused, the EAT study paper I found was about prevention of food allergies by introduction at 3 rather than 6? Could you provide a link to what I guess must be a subsequent study on desensitisation of already allergic babies? I can't find it and with an allergic 11 month old it would be really relevant? The desensitisation stuff I've read so far has all been about small doses.

With the sleep, my experience with a terrible teether is unfortunately there's nothing you can really do if they are in pain to train them. We got a little improvement using the gradual techniques in Elizabeth Pantley's books but mostly a huge step change once teething paused at 15 months. For us, it was all about coping strategies - are you taking midday naps at the weekend to catch up, are you taking shifts with your partner, are you going to bed as soon as the baby is in bed in the evening?

Do you know if it's just milk causing the problem? Is the reflux caused by milk? Sleep deprivation won't be good developmentally and if your parenting suffers anything like mine does when I'm exhausted that will have a significant impact on your child too. When are you seeing the doctors again, and could you ask them about cutting back to your child having just baked milk to see if it helps reduce symptoms?

BamburyFuriou3 Wed 18-Oct-17 10:01:14

No help to the OP but I'm really interested in this idea of non exclusion with CMPA. Please could someone start a thread on it (OP?). All 3 of mine have had dairy and soya intolerance. Only went down the consultant route with #2, as #1 gp didn't believe me (eczema, mucous bloody diarrhoea at 6weeks+, breastfed). And the consultant was no help. With #3 (15 months) everyone he has managed to swipe some dairy off his siblings I get no sleep for a week, and he gets horrible eczema confused and tummy pains for 3 days.
#1 grew out of it by 13 months, #2 by 2 years, although she still gets eczema if she has lots of non heat treated dairy.

Schwanengesang Sun 22-Oct-17 01:45:36

Thanks sentence, panda, bambury. Will try to get time to answer this week - life is chaos and DS is not sleeping any better!

Schwanengesang Sun 22-Oct-17 01:52:05

Just quickly re EAT: the info on how EAT relates to nonIgE is in the detailed data/methods supplementary info. That shows there were kids in the treatment group with nonIgE milk allergic reactions who recovered during the study. This matches clinical experience, and those kids don't tend to develop IgE later, unlike ones who avoid allergens, according to our immunologist and another paed immunologist friend.

try2hard Sun 22-Oct-17 07:04:19

But there may also be those who continued to consume the allergen and continued to have adverse effects? It just seems madness to me to keep your child in distress, which reflux and sleeplessness indicates, just in case it stops them having a long term allergy when the evidence isn't conclusive. I'd rather my daughter develop an ige allergy but wasn't in discomfort on a daily basis tbh!

Schwanengesang Sun 22-Oct-17 07:27:18

That we achieved only one week of no reaction in over 4 months of zero dairy, soy, various other things, strongly suggests that dairy may not be the main issue here. We don't know what is though.

We could have him live on elemental formula, stop breastfeeding, and discover that it's been silent reflux all along with a mystery allergen causing the early diarrhoea...

I will give no dairy and soy another go for a couple of months, but I predict that little will change.

Out of interest in this context, if feeding much less overnight and losing a lot of weight, how does one maintain milk supply?

BamburyFuriou3 Sun 22-Oct-17 07:46:19

You can pump to up supply but as long as it's meeting demand why would you? My supply has dipped recently as I've had a bit of an anorexia relapse, but as soon as my calories went back up the fussing and constant feeding reduced within a day. Ds is 15 months and still feeds LOADS. I

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