CMPA? I'm not so sure...

[leebee2017]

Hi!
Olivia is 15 weeks old, and has had quite a few problems since birth in terms of her feeding behaviours, so originally we were told she had colic, so we used infacol and it sorted her right out.
Next came the back arching and screaming during feeds, so we were prescribed infant gaviscon - didn't help at all! Next Olivia was prescribed ranitidine 1ml (150/10mg) 3 x daily. This helped her ENORMOUSLY! No more arching of her back and battling her bottles, but the sickness didn't stop. I started adding carobel to her bottles and she loved them, going up to 7oz every 4 hours (she currently weighs 12.8lb on the 25th centile) the carobel seemed to cause two explosive nappies per day though, really yucky stuff which would end up on her back, arms, head, everywhere! Then she started with really terrible gas pains when feeding which in turn made her refuse her feeds, screaming in pain.
She was on APTAMIL first the whole 15 weeks, then I changed her food to Hipp Organic but at this point she was already completely refusing her feeds and would cry at the very sight of a nearing bottle.
It was only Friday afternoon, less than a week ago, that she polished off a 7oz bottle in around 15 minutes with no pain, no crying, no fussing and held in a nursing position, to a few days later screaming and hating feeds and taking no more then a few oz at a time.
The dr put her on APTAMIL Pepti 1 for a a suspected cows milk allergy, so far she seems to be taking a little more of her bottles - 4-5oz at a time, but because it's so thin like water, she does throw it back up, not all of it but a good amount. She hasn't pood for 24 hours but still has wet nappies.

The thing is - is this really a milk allergy? She's been thriving and downing her milk up until recently, Albeit with the addition of carobel.
We can't add carobel to the new milk because it's closely related to the soy bean, which the dr believes she can't tolerate as the nappies speak for themselves and the gas pains etc.

I feel like there's something more, maybe she's had a bug and been off her milk for a few days? Maybe I shouldn't have switched her to her to pepti and continues with APTAMIL first or Hipp Organic? I don't feel that she's CMPA, she has no symptoms apart from feeding aversion and refusal + reflux.
No eczema, no mucus poos, her poos we're fine before the addition of carobel, always happy and smiling, never cries unless it's for a bottle or she's tired....
I just don't know what to do for the best. I want her to enjoy her feed but I don't want to take cows milk out of her diet if it's unnecessary? Surely she would have more symptoms in 15 weeks of life if this was CMPA? I've heard a lot of the time it's bloody/muscusy Poos, nasal congestion and eczema, none of which she has...
has anyone else been on a similar journey?! X

[QueenofmyPrinces]

I have a 7.5 month old who was diagnosed as possible CMPA at 8 weeks of life. It was suggested to me as he had some dry skin, he had reflux, he arched his back in pain and was also refusing to feed.

I was quite dismissive as his weight was fine, his poos were fine, he didn’t have diarrhoea or vomiting etc, all the signs I typically associated with dairy allergy.

My son was breast fed so I was advised to go on a dairy free diet and see if it made any difference and to be fair, within a week I saw an improvement in his feeding. He was more comfortable at the breast, he fed for longer, the pains subsided etc so I was more prepared to accept the diagnosis.

Whilst breast feeding him I have challenged the allergy a few times (advised by the GP) to see how my son reacts and both times I binged on dairy and it led to him having huge flare ups of eczema on his arms which he’d never previously had.

Have you been referred to a dietician or Paediatrician?

My advice to you would probably be to either continue with the Pepti seeing as it’s causing no harm and then slowly trial dairy when you begin weaning....google the “Milk Ladder” a it will show you how to introduce milk into an allergy child’s diet. However, this is usually only done under the guidance of a dietician and sometimes it’s not advised until the infant is a year old.

Or, go back to the milk you were using before and if the symptoms return then you can assume she does have CMPA and then go back onto the Pepti and demand a referral to a Dietician if you haven’t already.

Now my son is 7.5 months we have started weaning and it is a total nightmare so I can completely understand your concerns about wanting to remove dairy unless it’s actually needed.

Could you go back to your GP and discuss it with them and ask what they’d advise in terms of going back to her normal milk and seeing what happens?

[leebee2017]

Hi @QueenofmyPrinces thanks for your reply! It's such a struggle with these little ones!!

So to update, Olivia didn't react well to the pepti milk, she projectile vomited then point blank refused the bottles. So I offered her two of the same type of bottles, one with HiPP organic, one with pepti & she guzzled the HiPP, I tried to switch them sneakily mid way and she just refused to drink anymore.
I rang my HV to discuss and she told me to go back to HiPP, remove everything else from her feeds and just give HiPP and ranitidine & possibly calpol for teething issues.

Yesterday she upped her feeds from around 3/4oz to finishing 5oz, feeding back in a nursing position, no arching her back or pulling away. She does get very windy during feeds (bottom wind!!) which seems to make her uncomfortable, but I'm not yet ready to re-introduce infacol or likewise until she's fully settled on the milk.

She's being sick quite a lot of her 2nd bottle of the day, but she always has done with this bottle for some reason, I think I'll wait another few weeks and potentially turn this into a porridge feed to keep it down (when she's closer to 6 months that is)

She's done 2 poos since changing back to HiPP which have been very normal, back to the normal consistency and colour, so I think we will stick with it and all being well once we start weening this will eradicate the reflux issues.

I know reflux is one of those unpredictable things in terms of vomiting, but I can always 100% be sure that she takes bottle 1 fine, bottle 2 some discomfort issues and vomiting, bottle 3 & 4 fine.

I've been lectured about feeding little and often, and that 4 feeds a day is not enough especially with only 5oz at a time... but I've tried little and often and if I take the bottle Away from her she screams the house down until I give it back to her, then once the clock turns 9pm she's out like a light, I've tried waking her for a feed at midnight/1am/2am all the way to 4am and she point blank refuses to feed and looks at me like I'm mad

I'll take her for a weigh in on Tuesday and hope that her weight hasn't plummeted as a result of the feeding strike!

X

[QueenofmyPrinces]

I’m glad you’ve had some progress. The dairy free milks are pretty vile tasting so I’m not surprised she was reluctant to have any!!

For what it’s worth, with my first son I used Infacol for wind and after about a 10 days of using it he started getting abdominal discomfort, trying to pass wind and struggling and just generally being unsettled. It was recommended to me to stop using the Infacol, so I did and his symptoms disappeared after a few days. We then switched to using Gripe water which was far better. I haven’t used Infacol with my current baby as I didn’t want to cause the same problems.

Are you keeping a close eye on her ranitidine dose and weight? Ranitidine can also be given at 3 increasing doses based on their weight and they can have anywhere between 1mg per kg of weight and 3mg per kg of weight dependent on how they are responding and whether the symptoms are returning.

When my son was put on it at 2 weeks old he was on the lowest dose of 1mg/kg, this was increased up to 2mg/kg when he was about 3 months old and then it was increased up to 3mg/kg when he was about 5 months old. So, depending on what mg/kg she’s currently on it may be worth moving it up to the next step if she’s still showing symptoms with her reflux.

[leebee2017]

@QueenofmyPrinces that's really interesting about the infacol.... Olivia was on infacol from 2/3 weeks old, initially we thought it was helping as the dr said she had colic (something else I don't believe as she only cried for around 20 minutes in the evening)
Until we put her on the ranitidine actually, then once we took her off it she was fine.

About 2 weeks ago, I reintroduced infacol to her because she seemed to be struggling to get her wind up fully, it seems to be since then that we had all of these issues with her trumping and refusing feeds seemingly in pain. We took her back off infacol and took the carobel out of her feeds too and even though she's still sickly she seems a world better, her trumps aren't bothered her and she's lying back in my arms to take her milk which is a huge relief - we go on holiday in 3 weeks long haul and I was dreading her not feeding for me on the plane!!

Early days, but such a huge turnaround already!
With the ranitidine, she was put on the 'maximum dose' for her age/weight by the paediatrician when she was 9 weeks and weighed 10lb 4oz. He prescribed 1ml 3x daily. She's on the 10mg/150ml bottle.
It almost feels as if starting her on a high dose worked well to begin with but as she's grown its efficiency is wearing off...

Thanks for your help, it's reassuring to hear about the infacol too, as I had a nagging doubt about it which you've just confirmed! X