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Suspected CMPI but refusing Elecare


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#1 nephthysa

Posted 19 April 2018 - 05:34 PM

Afternoon all! I have a bub with silent reflux on Losec, but still not quite settled so paed has given us Elecare to try and see if this is the final piece of the puzzle. He refuses to drink it. He has had issues whenever I have tried to change formula previously and refused to feed, which is horrible as it is a struggle to feed him normally without adding to the problem. My main question is, is there any other way to determine or rule out CMPI? Bub has not had any nappy issues previously, no rashes, no other obvious symptoms that point to CMPI being the answer. Main symptoms are unsettledness, not sleeping more than two hours overnight and catnapping during the day, fidgeting and twitching during sleep, gulping, refusal to feed, shoving fists down his throat, and when first diagnosed screaming when feeding and pulling away arching back. This has now resolved into just refusing to feed.

#2 Wonderstruck

Posted 19 April 2018 - 08:06 PM

Lots of those things sound like they could be CMPI.

A couple of things you could try if you haven't already:
1. allerpro or pepti junior (extensively hydrolysed) from the chemist or Novalac Allergy (rice based)
2. Mix EBM or old formula with EleCare to get bub used to it - e.g. 1 part elecare to remainder EBM/old formula and gradually increase
3. flavouring the formula with a little maple syrup, vanilla or pure icing sugar until they are used to it and gradually decrease
4. a different amino acid formula - my bub will drink elecare but prefers Alfamino

The Neocate Village website has some info on how to help bub get used to such formulas

For us, our bub who was never entirely settled on reflux meds was a different baby on Allerpro and later Alfamino

Good luck

#3 gc_melody

Posted 19 April 2018 - 08:55 PM

Hi OP,

You have my sincerest and deepest empathy and sympathy. I've been where you are, but with the rashes. Is your LO fully FF, or are you mixed feeding. I ask as if you are mixed feeding, you will have to be really vigilant about potential allergens in your own diet.

Wonderstruck gives good advice. I was also told to add a little vanilla (not essence, but extract - no seeds) to help make the formula a little more palatable.
I have a now 4yro who is still CMPA and Soy allergy. My child is still medicated (20mg/daily) for silent reflux.

Allerpro is ok as a stop gap but an appointment with a specialist paed / gastro who exclusively deals with allergies will help immensely. Our lives absolutely changed after seeing a paeds allergist for several reasons.

1. Neocate. It's fully hydrolised whereas Allerpro and the like are only partially hydrolised. We still use it (milkshakes & cooking).

2. Reflux and allergies / food intolerances have a very high concordance rate. In other words, the co-morbidity sits around 80%-90% according to our peads.

3. Support. While those medical practitioners have the best of intentions, they do not specialise specifically in reflux and allergies/intolerances.

4. Education. An allergist/paeds gastro who specialises in reflux will give you a full on crash course on triggers/management and where to next.

5. We went from routine ambulance call outs and admissions to zero after getting the Neocate and Losec dosage right, and addressing the allergies.

6. Correctly identifying and managing the issue now, can save a whole lot of health troubles down the track (oesophagitis, Barretts etc).


My other suggestion is to join RISA (Reflux Infants Support Network). It'll be the best $25 you spend with regard to education, support and info on specialists in your area.

I wish you and your little one all the best. Reflux seriously sucks. It can be hellish.

Edit - Feeding refusal is not uncommon in reflux babies/kids. They've learned feeding hurts, so avoid it. Can you get make an appointment with a paed gastro/allergist and then get a referral? You need an allergist/paed gastro to write the initial script for Neocate.

Edited by gc_melody, 19 April 2018 - 08:58 PM.


#4 Ellie bean

Posted 19 April 2018 - 09:09 PM

PPS have given fantastc advice, I agree with both. And all my sympathy to you too, it is really hard and im sure you're doing a wonderful job.
Just wanted to add that on the (rare!) occasions I could put my CMPI reflux babies down from my arms, they were most comfortable for some reason in a fisher price bouncer and even slept in there overnight till 9 months or so (wouldnt do that without medical approval though).

Gcmelody I think elecare is actually as hydrolysed as neocate, just a different brand? Could be wrong though!

#5 AdelTwins

Posted 19 April 2018 - 09:27 PM

DS3 has had Pepti Jr (Aptamil) and Alfare (Nestle) and he is fine on this level. Elemental formulas taste even worse.

If he is over 5mo then you will need to add vanilla essence to the bottle. Before then you can usually get away with the horrible taste.

#6 gc_melody

Posted 19 April 2018 - 10:46 PM

View PostEllie bean, on 19 April 2018 - 09:09 PM, said:

Gcmelody I think elecare is actually as hydrolysed as neocate, just a different brand? Could be wrong though!

I could be wrong too Ellie Bean. We tried a two formulas suggested by the paeds allergist. Neocate has worked well for us and continues to.

I should add, I still remember the desperation I felt before seeing the allergist. It was Xmas time, so all the specialists were winding down for the break. I reached out here on EB in desperation. It was the collective brains trust which supported me and helped me find my way in those early days. I will be eternally grateful for the information and support I received back then.

Use the brains trust OP. There's a wealth of experience here. It'll help get you through the hardest of times.

Edited by gc_melody, 19 April 2018 - 10:47 PM.


#7 nephthysa

Posted 20 April 2018 - 11:25 AM

Thank you all so far for your advice.
I tried the Elecare in his overnight bottles with a little vanilla essence but he would only finish half of each bottle, where with his Bellamy’s he drinks the whole thing. So with the lack of food overnight, he has been up every hour.
With each of the previous formula changes (well, try’s) I would do 25% new and 75% old but he would still refuse them. We tried both Nan Comfort and Aptamil HA with no success in getting him to take them.
He is fully FF so no worries about elimination diets for me, one less thing to worry about. He is only 14 weeks old and this is getting too much to handle to be honest. I’m just about at my wits end - I even have days where I wonder if it’s all in my head.
The last paed appointment also discovered a slightly floppy larynx which I’m sure can’t help with feeding.

#8 catmeow

Posted 20 April 2018 - 11:46 AM

Your bub sounds exactly like mine did this time last year. It was exhausting and we too got to refusal to feed, arching, screaming for hours every day etc. Losec and going dairy free were life changing for us. I was exclusively breastfeeding so it meant dairy free for me, but when I returned to work we mixed fed with Allepro and then went to full FF with Allepro (I was lucky he tolerated that- I understand elemental formulas taste much worse). There is a great FB group called breastfeeding with allergy and intolerant babies. I know you said you are fully FF but some mix feed on there so you can probably search the old posts and see if anything they suggest helps. It is so tough and exhausting. I found that holding bub upright for 20-30 mins after feeds (killer at night) helped a little and had the cot propped up in books at one end, and used the bouncer a lot.

#9 gc_melody

Posted 20 April 2018 - 07:04 PM

My bold for responses :)

View Postnephthysa, on 20 April 2018 - 11:25 AM, said:

Thank you all so far for your advice.

I tried the Elecare in his overnight bottles with a little vanilla essence but he would only finish half of each bottle, where with his Bellamy’s he drinks the whole thing. So with the lack of food overnight, he has been up every hour.

It's a start OP. New tastes can take a bit of getting used to.

With each of the previous formula changes (well, try’s) I would do 25% new and 75% old but he would still refuse them.

Have you tried a lower split % wise and then every day increase by 10%? Might be worth a shot?


He is fully FF so no worries about elimination diets for me, one less thing to worry about.

That's one thing off the worry list !

He is only 14 weeks old and this is getting too much to handle to be honest. I’m just about at my wits end - I even have days where I wonder if it’s all in my head.

I totally understand this. It's not. Please get medical support from an allergist who specialises in infants and reflux.

The last paed appointment also discovered a slightly floppy larynx which I’m sure can’t help with feeding.

My DD had the same. It's a nightmare but they do grow out of it as their physical body matures. Hang in there OP ! You are doing the best you can with what you have at hand. :hugs:




#10 Wonderstruck

Posted 20 April 2018 - 07:06 PM

View Postnephthysa, on 20 April 2018 - 11:25 AM, said:

Thank you all so far for your advice.
I tried the Elecare in his overnight bottles with a little vanilla essence but he would only finish half of each bottle, where with his Bellamy’s he drinks the whole thing. So with the lack of food overnight, he has been up every hour.
With each of the previous formula changes (well, try’s) I would do 25% new and 75% old but he would still refuse them. We tried both Nan Comfort and Aptamil HA with no success in getting him to take them.
He is fully FF so no worries about elimination diets for me, one less thing to worry about. He is only 14 weeks old and this is getting too much to handle to be honest. I’m just about at my wits end - I even have days where I wonder if it’s all in my head.
The last paed appointment also discovered a slightly floppy larynx which I’m sure can’t help with feeding.

You are not imagining it - my baby has the exact same issues. She has reflux, cows milk and soy protein intolerence and a floppy larynx - shes 13 months and I got brushed off for too long by doctors who wouldn't care to listen - its exhausting.

This is a post I posted on Silent Reflux Babies Australia which is am amazing facebook group...

"Day in and day out I read posts by parents being brushed off in a desperate time of need.

For all those mums and dads who’ve been turned away from doctors with some reflux formula/thickener or conservative measures, or who are told there is nothing else we can try they are just an unsettled infant - please don’t give up.
If anyone can learn something from my story at least I know all of this has not been for nothing.

My baby was not JUST an unsettled infant - everyone but doctors could see that - friends, family, ladies in mothers group, Tresillian nurses, social workers.

It took countless formulas, various medications, tears from me and her and our family, two Tresillian residential stays, various Tresillian day stays, a PND diagnosis and two GPs, two paediatricians and two gastro paeds to get my daughter sorted 8-10 months from birth.

Don’t ever let them make you feel crazy - seek a second opinion if your gut says it’s not right.

Half the doctors I saw blamed unsettled infant, my own parenting skills being a FTM or behavioural issues - most didn’t listen.

Don’t accept good enough - our first gastro paed was good enough - I finally had an appointment to see another one and I thought maybe bub is as good as she’ll get so we won’t go.I did go and it was so worth it.

This doctor listened, took detailed family history - understood why my daughter was under treated because she listened to me and took note of family history.

She listened to my concerns about feeding issues. When I listed the issues to the speech pathologist she’s now on an urgent cancellation list - all these things were raised to countless doctors who judged my FTM status and just saw me as a crazy over anxious Mum.

My baby is 13 months - she has severe reflux, CMPI, possible LM and still gags and vomits on age appropriate or lower foods. She is not naughty, unsettled or difficult.

She’s finally happy because she’s feeling better.
So mums and dads, don’t let the doctors, anxiety, depression or tiredness get in your way - it’s hard to fight for your baby when everyone is telling you you’re wrong.
Photos, videos and detailed histories help.
Being assertive helps.
Get that second opinion.
Make sure you have an excellent team behind you.."

Let me know if I can help in anyway - its a hard road - I'd love to be able to help.

I agree with the PP - 1/2 a bottle is a start - I would try a lower mix say 10% and work up :)

Edited by Wonderstruck, 20 April 2018 - 07:08 PM.


#11 gc_melody

Posted 20 April 2018 - 07:40 PM

We saw our allergist today and I had a discussion with them about the needless trauma parents and infants/babies go through to get an appropriate diagnosis and medical treatment and support. The myths which persist astound me and beggars belief !

It's all so damned unnecessary and makes my blood boil. The mother blaming in particular.

#12 Ellie bean

Posted 20 April 2018 - 09:13 PM

Yep I've done some pretty stressful things in my life that people have been impressed by but none of it matched the difficulty of looking after a severe reflux baby- and literally no one understands (or even wants to hear it) except other reflux parents IME. We are here to listen to you. One day (or hour, or half hour!) at a time is all you need to get through.

Are you giving the Losec at least 20 mins before feeds? We also found giving half the daily dose, 12 hours apart, was more effective- babies metabolise the medication quicker than adults. If your baby is in a cot, is the head end slightly raised?

Losec is also weight dependent, dose may need to be increased as they grow

Hope things start to improve soon



#13 Wonderstruck

Posted 21 April 2018 - 06:04 AM

Agree on splitting the dose. Also push them to check the dose.

We needed 5mg twice a day at that age and now it’s apparent to be in seeing a gastro that my child actually needs a rather high dose.

If there is a mother and baby unit they can be great support and a bit of respite (Tresillian or Karitane in NSW).

Here to listen and for advice any time.

My FIL used to come and hold her for a few hours as he was the only one who was retired so I could shower or pee.

My ergo baby carrier saved me some times. You’ve not lived till you’ve used the bathroom with a baby strapped to you lol

#14 MillyM

Posted 21 April 2018 - 07:20 AM

I second the mother baby unit for respite and support. We went down the Elecare and Allerpro route after similar symptoms and my baby just wouldn’t feed. In the end the right level of losec and Karitane lactose free formula, thickened, worked. Big hugs, it is really hard. One hour at a time.

#15 nephthysa

Posted 24 April 2018 - 10:51 AM

Update for today - sleeping is still terrible, but he is now showing hunger cues and drinking more bottles while awake yay! He seems to be accepting the formula better, we have just started doing 50/50 with the new formula.

I’m picking up a script for formula today from the paed and keeping my fingers crossed.

One thing I have noticed and I’m not sure if this is related but - LO had a blocked tear duct at birth and had had a weepy eye since then (he is now 15 weeks). It has virtually cleared in the last couple of days. Could this be to do with the suspected CMPI?

I’m off to buy a mattress today as sleeping on the floor in the nursery is not working ☹️ I’ve just moved him out of the bassinet as he’s almost too long for it anyway (it is elevated) and he’s on the cot mattress on the floor with me, it had a wedge under the sheet.

He did wake up around midnight last night screaming because he had thrown up, poor thing. He was so upset!

#16 gc_melody

Posted 24 April 2018 - 07:43 PM

Good to see your LO is showing signs of accepting the formula. That's great progress !

I don't want to be a wet blanket, but a mattress on the floor probably isn't best position for a reflux baby to be sleeping in. Is there any chance you could get a second hand cot if money is an issue, and prop up the head of the cot? The stomach needs to be higher than the throat to lessen the possibility of the acid sloshing back up the esophagus.

I'm not sure if you've already been referred for one, but a barium meal swallow is worthwhile to confirm reflux and identify any potential structural issues. Some people have reflux solely due to allergens, some largely due to to structural differences and some a combination of both. A paeds gastro usually likes to have had a barium meal swallow test completed before they review. If not, they will usually make that referral themselves. My DD had one and she looked like a spirit level, the poor thing. She has a combination of structural and allergen induced reflux. We're doing the watchful waiting to see if she might need surgery to correct the structural aspect when she gets older.

What script formula did your peads recommend? I hope it works better for you. I agree with Wonderstruck, a higher dose of PPI (Losec) might be needed. My DD was on 20mg per day at three months of age (split into two 10mg doses morning and night). She is still on the same dosage at 4yro and I'm certain the dosage hasn't needed increasing because she is now upright, and I tightly control her diet for dietary triggers. Of course, this is under medical supervision and reviewed quarterly or more often if needed.  

Surround yourself with a supportive network. Managing reflux is a marathon and you could do with all the support you can access. The EB community is here for you anytime you need us.

ETA - I'm not sure about the link between reflux and the leaky tear duct. I've not heard of that symptom before and didn't experience anything similar with my kids.

Keep us posted OP.

Edited by gc_melody, 24 April 2018 - 07:45 PM.


#17 gc_melody

Posted 24 April 2018 - 07:46 PM

I forgot to add, if it is CPMA or intolerance, it can take up to 8 weeks for the CMP to fully leave the body. So baby steps but it sounds like you are on your way OP.

#18 nephthysa

Posted 26 April 2018 - 10:08 AM

Thanks gc-melody, we do have a cot but he sleeps better right next to me so I pulled the mattress out temporarily. It’s now back together and the mattress is on an incline, as was the bassinet.

Our paed upped the dose of Losec to 6mg twice a day as LO is just over 6kgs. I’m not sure this is making a difference at this stage, but I’m hesitant to change anything until the formula swap is more in place. We are at 75% new formula at this stage, planning to be at 100% by the weekend. He’s not in pain that I can see, just unsettled but you never know.

Structurally, he does have floppy larynx which calls for a PPI prescription apparently to reduce the incidence of issues arising if reflux is to occur according to the paed.

It’s just so confusing and overwhelming. Hoping Ngala tomorrow and Monday can help us out too.

#19 gc_melody

Posted 27 April 2018 - 11:05 PM

I co-slept with my child as she would settle much better, so I completely understand your logic with the mattress.

I propped my bed up. I spent many, many hours with DD in a carry wrap and me sleeping upright. It was hideous and I feel for you. My DD was <3kg and put straght onto 20mg of Losec daily and panadol for breakthough pain by the paed gastro. Don't be afraid to discuss increasing the dose with your paed if you think it could be warranted. Are you using INfant Gaviscon as well? That puts creates a bit of barrier while the Losec decreases the acidity.

The main thing is to reduce the acid in the reflux at this stage. DD ended up with her poor esophagus red raw and it took months to heal. I'm of the view (as it our allergist & gastro) when babies have significant reflex, treating the symptoms aggressively first, while working your way through to the root cause is a reasonable approach. This is because it could take months (in our case years) to find a comfortable set point so to speak.  

It's great to hear your LO is taking more of the hydrolised formula. Keep in mind it will take up to two months for the CMP to exit your LO's system. But hopefully, you'll see a difference sooner rather than later.

All this aside, I hope it gives some hope this challenging time will settle eventually. It's hard to see when in the trenches of a flare up.

Thinking of you and your LO OP.

#20 Wonderstruck

Posted 28 April 2018 - 08:35 PM

Agree with the bub - seeing a paed gastro was great for us.

My bub was always under medicated until we saw her current gastro - she’s now 14 months and on 20mg of Somac twice a day.

Some babies need more aggressive treatment than others due to the way they process the meds.

So glad to hear you’re making progress. We have a floppy larynx here too and ENT explained that the reflux meds stop the acid from irritating it

#21 Ellie bean

Posted 28 April 2018 - 08:47 PM

I hope ngala helps OP

#22 gc_melody

Posted 04 May 2018 - 08:59 PM

Thinking of you OP. I hope things are improving.

#23 nephthysa

Posted 10 May 2018 - 09:00 AM

Well I thought they were!
We were getting five to six 120-150ml bottles of 100% Elecare in with only one wake and feed overnight. He was even showing hunger cues, which he has never done.
Until about four days ago.
He’s now started to refuse to feed again, including dreamfeeding, waking every hour screaming, not napping well during the day (waking between cycles about every 20mins and only sometimes resettling).
Ngala gave us some ideas but also said that the reflux wasn’t controlled so that it may not be effective yet.
We have a follow up with the paed on the 21st but I’m getting desperate - lack of sleep is killing me and the psychiatrist wants me to start taking antidepressants. I don’t know what to do!

#24 Ellie bean

Posted 10 May 2018 - 09:53 AM

See if the paed has had any cancellations and can you get an earlier appointment, I'd ring every morning.

#25 nephthysa

Posted 10 May 2018 - 10:33 AM

Thank Ellie, will keep trying but he’s away next week too 😫




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