CMPI baby - won't drink any hypo milks. At wit's end.

[narmada]

DS is 5 months,suspected of having CMP intolerance on acccount of snottiness, vomiting, mucusy stools and now some little skin rashes.
He also has severe silent and sometimes not-so-silent reflux which has been present since birth (he was BF for 5 weeks), and is on Lansoprazole for that. He is also suspected of having delayed gastric emptying but whether this is secondary to the cow's milk issue or independent of this, we don't know. He may be starting erythromycin this week as a motility agent, too.

We have tried to gradually wean him on to neocate over a period of 6, yes 6, weeks but he won't drink it even heavily laced with golden syrup/ milkshake syrup/ vanilla flavouring/ all of these. Same goes for supposedly more palatable aptamil pepti. He's not fooled and has a feeding aversion anyway which is getting worse the more times we try him with the more unpalatable formulas. Although I have considered it really carefully, relactation is not an option for me as I had/ have severe PND and a 3-year-old to look after too. BM milk share has been suggested but having looked into it, I am not comfortable with this as a long-term option as it means that it's difficult to leave the area and there is no certainty about supply.

We can't replace milk calories with solids because his gastric motility issue means he is worse when he's consumed solids.

Does anyone have any ideas what we can do? We have paedeatrician and dietitian support but it is us that are dealing with the hours-long feeding battles every day and it is really, really getting us down :(. Presumably getting DS down too as he must be hungry and in discomfort :( :( :(

Have tried soy formula even though it's not recommended, but he won't drink that either, BTW.

has he had an allergy test, my lil man was tested at 5 months (as part of a trial) he tested possitive for milk, eggs and cats (i had suspected the milk cuz he had the same reactions as your man, when i gave him top up up bottles). you can't give boys under 1 soya, they gave me aptamil pepti for the mangagement of cows milk allergy/intolerance.
have you asked your doctor or health visitor for a referal to a allergy clinic? also if it is milk he will need to avoid all dairy products.

Hi alix he has had a RAST blood test for CMP, it came back negative but the paed said this was to be expected given his age and fact his is likely not a true allergy, just an intolerance. No, not been to allergy clinic, perhaps it's something we should press for.

I think we are just going to have to bite the bullet and try going back to neocate otherwise the inflammation is never really going to go away, if that's what it is. Need to speak to dietician fiirst tho as don't want to make aversion any worse than it already is.

Sorry I have no advice re the allergy/intolerance but how is his hand to mouth co ordination? if you give him a weaning spoon will he chew on it? If he does dip it in the milk and leave him pop it into his mouth to taste the product as it may be a rejection because of the bottle =food=pain or try it in a sippy cup to see is it the bottle that causes the problem iyswim This was the case with my niece and a sippy cup solved the problem some what.
Hope you get more help and better advice soon

canyou thanks for your response. He can def get things to his mouth, will chew on anything you give him so your suggestion makes sense. Have tried sippy cup but he just spills it and spits it out.

I think, although I am not sure, that the feeding issue is to do with physical discomfort as well as psychological aversion; he struggles no matter what's in the bottle, but will persist a bit longer (and drink more) if it's aptamil rather than something more yucky.

Today on several occasions both DP and I have nearly launched bottles across the room in sheer frustration! Dearie me.

this is the one my niece had if it helps my sis has on occasion put her dd down in a cot rang some one and sat in adifferent room through sheer frustration,

thanks again canyou. For some reason I'm getting a tesco login page with that link tho ! Did your niece have reflux?

Sorry it is a Tomme Tippy explora first sips cup or tesco's own brand of the cup.
Yes it was reflux and a under developed digestive system, She was a premie and had a few other probs as well but seems fine now a normal toddler in every way but a restricted diet and really only eats baby food mush [easy to digest] but they are getting there, most of her problems seem to be more psychological now as opposed to medical.

I think I saw a thread by you Narmada earlier this month or last month about this. Sorry to hear it's no better.

Have the dietician/consultants got any clever ideas?

canyou thanks for the info, we have been trying a sippy today but I can't say it was wildly succesful! Glad your niece is now doing well.

pancakeflipper thanks for posting - in many ways it's getting easier now with DS, because we know him better... still, the food refusal and his obvious discomfort is hard to deal with. DP is currently walking him about, wailing (DS, not DP, although he might be soon), bless him.

exhaustednurse oh yes, relactation's a killer. I did it with my first, so feel confident I've made the right decision this time around. Although it was very, very difficult it was succesful with DD1. But this time I just don't have the resources. Hope the PND has lifted now.

I could ask the dietician for nutramigen I think, but TBH he appears so, so sensitive to what's in his bottle, I think any of the less palatable ones are going to be problematic. I suppose if you're in discomfort you're only going to eat something if it really tickles your fancy. Aptamil Pepti tastes a bit like horlicks so not that bad, but he won't even drink that unless I put nearly a dessert-spoonful of golden syrup in with it, and even then it's a battle. I All that sugar can't be good for him, surely? It also has to be really warm and if it starts to go cold half way through, he definitely won't touch it - basically, he's a right little fusspot :) Tried Nesquik, vanilla essence, brown sugar, the list goes on, but he is not fooled. Arrrrrrrrrrrrgh. I am hoping that when he starts some new medication this week (erythromycin at a low dose) he may less uncomfortable and therefore be more amenable to different formulas.

Thanks again everyone.

The consultant/ dietician are both very nice, BTW, but I think all they see is a chubbyish baby and probably think we are over-egging it a bit. But I can just see he is so much obvious discomfort while he's feeding. The sad thing is that its possible he won't feel better unless we do use only neocate, but that will mean basically starving him as he won't drink it. Can't win :(

I think you just hold onto the fact nothing stays the same and once weaning this battle will lessen. You'll probably be fighting different battles - but things will progress.

I think you should shrug off the sugar worries. I know it's hard and I have the same worry about my 2 yr old and the sugary neocate. But as they older it's easier to balance the diet even with allergies.

pancake did you have to flavour the neocate then? I am goimg to stop worrying about sugar for now - least it's extra calories!

DP and I have decided to bite the bullet and just only offer him neocate. It's not like he loves the pepti anyway, and if we do it for 2 weeks and he's no better, then we can finally rule out CMP issues.

I was very very lucky.. We were armed with the milkshake syrup in case because the dietician warned us, but mine just drank it. He was older - he over 1 yrs old when he first was given Neocate. In fact he has it on his cornflakes etc.

I do worry about the sugary content of his diet with the neocate and the fact my boy is a tricky eater ( well he appears tricky to me cos' his older brother is a great eater) and tends to slide towards things like fruit and sweet things instead of veg.

But I can cut down on others sugars in his diet knowing Neocate is apparently full of it. On my days of worrying about it - I worry about it. But then I draw a line under it for a while and think " look he is now thriving, he isn't constantly sick and not being able to develop cos all his energy is gong into being so horribly sick and he is not in agony."

Good luck. Just keep chanting " it's not forever." And keep us updated on what happens with him the milk, consultants etc..

We used nutramigen for DS1. And yes, it had to be very warm to get him to take it.
Have to admit I never looked at sugar content, I think I was so grateful to find something he would drink and tolerate, but it might explain his love of all things sweet. Luckily, he is still a skinny runt, so i just brush his teeth more and try not to worry too much.

BM is so sweet, don't worry, I say!

DS has now decided he will only drink normal aptamil, not pepti, not even sweetened. Tried neocate again - drunk 1/2 oz since 6 am - that's no good. I am tearing my hair out.

Going to speak to the dietician today at lunchtime. Will ask for a can of nutramigen today, but failing that, I think we will shelve our experiments with milks until he is on the erythromycin.

I am pretty sure that a large part of DS's problems is just plain old reflux, as he was exhibiting what I now know to be reflux-related extreme back arching when he was just 2 days old and EBF. I thought he was trying to roll over [rolleyes].

What are the affects on your son when he has aptimil? Just wondering (like you probably are) if you can just use that until the next stage?

Well... he definitely doesn't have a true allergic reaction.

He has been very snotty since birth, vomits, squirms a lot, mucus in poo, really poor sleep, etc. We have never had him on a milk-free formula for long enough to test the theory that it's milk that's causing the problems. The symptoms could all just be because of severe reflux. The reason I am not 100% sure of the milk connection is that it all started immediately from birth, and he has improved a bit on acid-blocking medication. He improved massively on antibiotics, we think because they have increased gut motility as a side effect. He was still consuming some milk while on them. All his symptoms could just be a result of reflux, we just cannot be sure. He does have a few sore cracks around his ears BUT these seem to get better with sudocrem and I think it may just be a bit of migrating cradle cap.

I suspect also that his dose of acid-surpessors is not high enough to make a difference. As an experiment, and in total desparation this morning, I have given him 50 % more than he is supposed to have, and he is now asleep after a full bottle of milk with very very minimal wriggling (unusual for him). I feel like we are casting around trying to arrive at a diagnosis on our own most of the time!

God, I sound really irresponsible with his medications - I know other people whose children both younger and lighter than he his who've been prescribed a higher dosage than DS is on so am fairly confident it's not going to do him too much harm in the short-term. So desperate for a solution.

I know the feeling of trying things out out of desperation. Keep a dairy of everything you do. Patterns will emerge from the oddest of things.

I think if I were wearing your shoes I'd stop the neocate ( and sshhhhh I would try the upped meds again - you can phone your Dr to check if any harm) cos' I think for a few more weeks you can live with his symptoms even though it is hell. Trying to feed him something he won't take will distress him even further. And at the moment you don't yet know what you are battling with. But that's me. I always felt I had to be doing something to try to improve things and probably made things worse with doing so at times.

My boy had horrid reflux. Then he seemed to out grow it. Then went into a cycle of vomit, runny bum, lethargy, ezcema, not developing as he had no energy to 'learn'. We couldn't go out with him as he was too ill. It has a huge effect on the family doesn't it?

Keep plodding. You get out of this hell. It is just so miserable being in it. Once you know what it is - you kinda have this sadness then you fight back on and adjust to what needs to be. Then it gets easier.

pancakeflipper that is exactly my worry about the neocate and other milks - putting him off completely.

I have decided to take matters slightly into my own hands a bit more. Have just done improvised allergy scratch test on DS with aptamil on one forearm and neocate on the other as control. Just waiting for a bit to see what happens. It's a bit home-made but hey, you never know, and he didn't mind having it done - I did it on myself first to see if it hurts and you can barely feel it. Plus, he's had much worse done than that!

You've described the coping-with-reflux process perfectly. Sorry your DS and you went through it too. It stinks.

Definite unambiguous reaction on aptamil arm. Neocate one right as rain. Oh fuck.

Oh pants

Ok, may have panicked a bit there . The other one on the 'control' arm came up as well shortly after, from which I conclude that it was the scratch itself that caused the redness. After 45 minutes both arms looked the same. Which maybe, just maybe, means that it's not milk after all. If so I would be mightily relieved. He has been generally better today despite cold. Feeding better, sleeping without quite as much wriggling. I may just try the higher meds dose for one more day......