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Disydo2018

Feeling worried about CMPI and solids

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Disydo2018

Hi everyone, I'm a FTM and my 4 and a half month old DS has cow's milk protein intolerance and reflux. He's on pepti junior prescription formula and nexium. He's been on the nexium since he started spitting up blood at about 2 weeks old and he's been on the pepti junior since about 6 weeks.

 

His symptoms are pretty well controlled but he is getting quite a lot of ezcema, especially on his face. We have an appt with a specialist nurse about that tomorrow.

 

My question is though, as DS is approaching 5 months we're starting to think about solids and I'm quite worried about introducing allergen foods in case he has a reaction. I know I'm meant to intro them early but I'd just be really interested to hear how others have dealt with this.

 

I'm also wondering how likely it is my DS will outgrow CMPI and would love to hear others' experiences. My paediatrician said he most likely would outgrow it by 6 months but from what I've read it could be more like 12 months or even 3-5 years. Help?

 

This is all very new to me and I'm just scared that my baby is going to have long-term food allergies. I've read that babies with eczema are more likely to have food allergies in general. Any words of wisdom would be much appreciated.

 

TIA.

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CrankyM
Posted (edited)

We had no problems with other food allergens. My boy was on neocate. He outgrew his problems around 4.5 which is considered late (we thought at that point he wasn’t going to outgrow it). He does get hives on and off a few times a year but it looks like it’s grass related (he’s also sensitive to some washing detergents). I think the only one we were slow to introduce was nuts. I’m pretty sure he has eggs, seafood, etc before he was 8 months old. (He was failure to thrive so he was fed a lot of eggs to try and boost his weight gain and various seafood can be high in calcium). He did have one reaction and we ended up getting a skin prick test done but looking back it was the time of year he always tends towards hives due to copious amounts of grass pollen/seeds (I live in a grassland area).

 

All I will say is be careful when you introduce them. Don’t introduce common allergens all at once. Do them one per a week/fortnight. (Course I wasn’t great at that and my kid was basically eating a version of the family meals by 7 months).

 

ETA on the excema are you sure it isn’t dairy related? I though pepti jr while broken down isn’t completely broken down so there is some dairy proteins. My child would get some rashes (and gastro symptoms) when exposed to the tiniest amount of dairy or actually more often soy was a higher reactant. It’s why they put my son on Neocate without even trying the other ones like pepti jr.

Edited by CrankyM

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Ellie bean

Both of mine were in pepti and we have no allergies, nothing but a mild lactose intolerance now at she’s 6 and 7- we have been incredibly lucky, I really hope this is the case for you too

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Disydo2018

Thanks for the responses! Both of your stories are really reassuring, so thank you for that. Fingers crossed we have a similar experience.

 

On the eczema, we've just seen the specialist at the royal children's and she said that the allergy triggered the eczema so we're not doing bleach and salt water baths which is a bit intense but seems to be making a difference.

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Wonderstruck

My daughter was cmpi but a late diagnosis at 8 months.

 

We introduced all other allergens early at 6 months with no issues.

 

My DD 3 is three and from 18 months tolerated baked dairy, cheese from 2. She doesn't do well with yoghurt or cheese.

 

One handed cooks (they have 2 excellent books) was my bible as every page of the book had allergy swaps.

 

She's still on somac at 3 but she's a severe case as an endoscopy at 2 showed damage and reflux.

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Mollyksy
Posted (edited)

My DS could get by with allerpro so we kept him on formula until 3 and introduced rice milk around 18 months as well. I used his formula in fares as well as to thin mashed veges but his reflux meant that unless it was smooth puree he would gag so he was about two when he ate more textured food.

 

He was ok with cheese at about 3 then icecream and yoghurt were ok (prior we used soy yogurt and coconut milk yoghurt). But not cows milk, that would cause projectile vomiting.

 

We have just not bothered with cows milk since. He is now six. He eats cereal with rice milk. He can have cows milk in cooking. I suspect he would be ok with it in a cup but he is a fussy boy and would not try it.

 

I agree with a PP that the eczema might mean he needs neocate. Intolerance can cause excema, that's how we knew DS had a CWPI. I'd be asking for a trial of neocate which is not based on dairy/cows milk.

 

I would be wary around soy especially as it is also present in a lot of kids with CMPI. We were ok but he didnt have much as as you can tell given he improved massively allerpro, his intolerance was not as bad as your DS.

 

Chances are great your DS will grow out of it but not until five or so my research says. That's odd the paed said that. My own (ex)paed was hopeless and suggested I try attachment parenting rather than consider CMPI!! I'm attached quite fine thank you and oh look, allerpro meant he stopped screaming, no loose poo for the first time in his life, and excema greatly improved. Magic! My point is paeds dont always have in depth knowledge about everything and it doesnt hurt to ask. Good luck!

Edited by Mollyksy
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Questionable13

My third is cmpi and has a mild egg allergy. She is breastfed and we have had no issues with introducing other allergens (from 6 months).

My Dr has advised we wait until 12 months to commence a dairy ladder challenge. I have slipped up a couple of times and eaten something with dairy (that has then passed through the breastmilk) and she has reacted, so I am happy to wait until over 12 months to try a challenge. We've been told by 12-24 months most babies do grow out of intolerances but it can take longer.

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Disydo2018

My daughter was cmpi but a late diagnosis at 8 months.

 

We introduced all other allergens early at 6 months with no issues.

 

My DD 3 is three and from 18 months tolerated baked dairy, cheese from 2. She doesn't do well with yoghurt or cheese.

 

One handed cooks (they have 2 excellent books) was my bible as every page of the book had allergy swaps.

 

She's still on somac at 3 but she's a severe case as an endoscopy at 2 showed damage and reflux.

 

Thanks for the book recommendation! I'm going to order it. I hope your DD improves as she gets older.

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Disydo2018

Thank you for the replies! All super helpful.

 

Mollysky, I also thought that the eczema was to do with the CMPI but the eczema specialist said that while that's what triggered it, it was now it's own separate thing as DS is no longer getting cow's milk protein...but the pepti junior still has some. Confusing. I'll ask again next week. The paed said unless the eczema was severe we probably wouldn't want to switch to neocate. I'd heard babies often really hate the taste and, at that stage, I was still thinking DS would outgrow the whole thing by six months so it seemed less important. I'll revisit that as well thanks.

 

Thanks for the warning about soy, I'll be careful.

 

Questionable, good luck with the dairy challenge!

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Acidulous Osprey

We use alfamino in preference to neocate. It's still vile but it's nicer than neocate according to my son.

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Disydo2018

We use alfamino in preference to neocate. It's still vile but it's nicer than neocate according to my son.

 

Thanks!

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Mollyksy

Disydo, you are correct. Pepti Junior is an extensively hydrolyzed formula and neocate is an amino acid based formula. I am concerned the paed or the specialist wouldn't know it still has an amount of CMP in it. I agree that switching would be for severe reactions as it does taste foul and your DS is probably at a stage where he may react. Having said that, he is getting pepti jnr now which doesnt taste the best itself! I think the biggest problem is bubs that go from sweet breast milk to sour neocate!! Allerpro was sour and I assume pepti even more so.

 

Your DS does sound like he is at the severe end of an intolerance. What do your instincts tell you? Is the excema bad enough to give it a go?

 

You'd introduce it slowly over time (so 90% pepti, 10% neocate/alfamino at first then move on as that is tolerated). At the more severe end it will likely take a few years until he grows out if it and depending on how he goes with solids you may be using this formula for a few years.

 

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Mollyksy

Another option is to try a soy based formula at 6 months. Again, I warn that those two intolerances can go together. Personally I'd save soy for say a yoghurt in the solid days once you get formula under control. But it is an option.

 

I also see there is now a rice based formula that may also be an option, but expensive! See e.g. https://www.superpharmacy.com.au/products/novalac-allergy-0-12-years-800g?gclid=Cj0KCQjw-Mr0BRDyARIsAKEFbeeElIrv8U2WNsAFAVWob4MZNq2vegkku2x1NeO6tEh818kzK1kiPBEaApq_EALw_wcB

 

If you do decide to give the a formula a go, maybe check in with local pharmacists how it works. Is one easier to get than another? (allerpro was in great shortage in my formula days and I had to buy direct from the manufacturer so I am wary now supply wise for any formula!). What is the price difference script v non script. Who can write a script (go or just specialist) etc.

 

Good luck! Sorry for the essay but I feel for you. I had a terrible time getting help for my DS and I had to teach myself how to help him.

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Ellie bean

Pepti junior definitely has some dairy in it. Like pps I’d want to be trying a fully hydrolysed formula to see if that helps the eczema.

Not sure if it’s still the same but I know 6 years ago you needed to have an appointment in place (even if it was in the future) with a paed gastroenterologist, before the normal paed could write a script for neocate etc- it may be worth asking? A paed gastro appointment may not be a bad idea anyway

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PizzaSteve

Hi, my son had CMPI which was diagnosed at about 5-6 weeks, and as I was breastfeeding I eliminated dairy from my diet completely. However, after little improvement I also had to eliminate soy.

 

I transitioned to normal formula around 9 months (he never took to neocate) and he has grown out of his intolerances completely - can have dairy as normal and no other allergies (just food fussy).

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Disydo2018

Thanks so much for all the advice, everyone.

 

Pizzasteve, that's great that your son grew out of his intolerance so quickly - gives me hope.

 

Mollysky, it is all a bit confusing. Basically when we last saw the paed they thought the eczema was related to the CMPI but didn't think it was bad enough to try neonate - but would have if we'd pushed it. I'm reluctant to switch formulas because we had such a horrible time with other formulas and DS' symptoms are all under control now (except the eczema, but I'll come to that). The paed said if we were worried abotu the eczema and it got worse then we could make an appt with a specialist nurse he worked with who works at the Royal Children's and specialises in eczema. That's who we saw last week - I thought she made that comment about pepti junior not having dairy but maybe she meant it was a very low dose.

 

That appt was both good and not what I expected. I expected them to say it was the CMPI causing the eczema but she thought that was the initial trigger and that now it was separate.

 

We've followed her advice for 5 days now (lots of creams, bleach baths) and the eczema is almost gone completely.

 

So, if we can manage the eczema I'd rather not switch formulas as I don't want a repeat of the horrors we went through before (started on nan supreme, then switched to allerpro, then to pepti junior). The crying on the old formulas! Jeez.

 

Ellie bean thanks for the appt and script advice. I know that the pepti junior script is heavily controlled - have to have finished all the repeats before you can get a new one, and we had to try allerpro first - so I imagine neocate is the same if not worse. I'll see what I can find out.

 

Thanks again all. I think my main question now has to be, if we stop doing all the eczema treatment, will it just come back because it's CMPI? Or do we keep doing the treatment hoping he'll grow out of everything in the meantime.

 

I think what I need to focus on is that DS is a happy, healthy baby at the moment and try not to get too worried about the future. Easier said than done but I'll work on it!

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Bendersmum

My DD has a diagnosed CMPA. Her immunologist said allergy and eczema tend to go hand in hand although one doesn’t necessarily cause the other.

 

She was breastfed so I can’t really give you any advice about the formula issue but for the eczema we’ve recently discovered a combination of pool salt baths and a liberal post bath application Child’s Farm baby moisturiser to be really effective. You can buy both at Big W and they are way cheaper and better for her than all the steroids we used to have to slather her in.

 

And yeah if you stop all the eczema treatment it will probably come back, but bubs will likely eventually grow out of it - that’s what I’m hoping with mine anyway!

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Disydo2018

My DD has a diagnosed CMPA. Her immunologist said allergy and eczema tend to go hand in hand although one doesn’t necessarily cause the other.

 

She was breastfed so I can’t really give you any advice about the formula issue but for the eczema we’ve recently discovered a combination of pool salt baths and a liberal post bath application Child’s Farm baby moisturiser to be really effective. You can buy both at Big W and they are way cheaper and better for her than all the steroids we used to have to slather her in.

 

And yeah if you stop all the eczema treatment it will probably come back, but bubs will likely eventually grow out of it - that’s what I’m hoping with mine anyway!

 

Thanks for this! The baths we're doing at the moment have bath oil, pool salt, and bleach. Great results so far - not sure what the most important ingredient is.

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Mollyksy

If you can control it then go for it! He will get better over time and over time formula will make up less of his diet so any small amount of CMP will stop affecting him. I understand your reluctance to switch formula and I remember the formula hell before you find one that works. My DS didnt sleep more than one sleep cycle (42 mins!) Until he was five months and on allerpro. This time though you wont get the intolerance pain, just potentially a screwed up "mum, this is gross" face and unhappy cries! But you also run the risk of bottle refusal altogether so definitely if you can manage the eczema then keep going. You are doing great work Mumma! All the right things and its working. Please make sure you stop and reflect on how awesome that is! All the best.

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Zeppelina

My DD was diagnosed with CMPI at 3 months, after her symptoms worsened to the point where she had failure to thrive because she just wouldn't drink any milk at all, and the little we got into her she would projectile-vomit up.

 

Our second paed (the first refused to believe it was CMPI) gave us Alfamino to try, and within a week she was a different baby! We had no trouble getting her on the Alfamino, and I have heard that it tastes better than Neocate.

 

We didn't try her on any dairy at all until she was about 2yo, and then we found she was fine with cheese and yoghurt. At about 2.5yo we tried a bit of milk, and she was fine. Now at 4.5 milk is her favourite drink! She still gets a bit refluxy if she has too much, but can have half a glass to a glass a day with no problems. Cheese & yoghurt & other dairy are all good.

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Disydo2018

Glad to hear that your DD seems to have grown out of her intolerance zeppelina!

 

Thanks everyone for the advice and for sharing, I really appreciate it.

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*Arcadia*
Posted (edited)

My DD was diagnosed with CMPI and silent reflux at 6 weeks old and went onto Alfamino and losec. 2 weeks later she was a different baby sleeping for longer stretches, her angry rash went away and she was much happier in general. Like a pp mentioned we saw a gastro pead to get the Alfamino scripts. She took to solids well and has no food allergies. We introduced dairy around the 12 month mark and she was fine with it and at 4 now still loves her dairy products :yes:

Edited by *Arcadia*

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