CMPA causing reflux?

[Elliekin]

Hello,

I wonder if you have any advice or can signpost me please?

I’m a sleep consultant with an understanding of reflux and allergies but I'm not an expert!

I have a sleep client with a 10 month old baby who is being treated with omeprazole for reflux, having been on ranitidine previously.
He’s been on Omeprazole for over 2 weeks with no improvement.
To me, there are two options and only one seems likely;
A. He’s a very difficult baby who won’t sleep and is sick a lot
B. He has an undiagnosed CMA and is in living hell.

I’m 99.9% sure it’s B.

The poor mum is uninformed and overwhelmed, she doesn’t seem to have done any research of her own and is just in survival mode.
She contacted me as she hasn’t had more than 2 hours straight sleep since birth and is being fobbed off by various doctors who don’t take her seriously.

She wants to push for more/different medication because her friend’s child is on it (Nexium/lansoprazole).
I’ve explained it is another similar PPI and so probably won’t change anything if omeprazole isn’t helping and that we need to identify the root cause of the reflux, rather than mask it with medication.

She is struggling to grasp that the reflux is a symptom and not an illness in itself.

I’ve said that it’s likely to be CMPA but she doesn’t seem to be taking this onboard as the GP's as dismissive and as a result she’s at breaking point.

She’s tried Similac, Nutrimigen and others in the past and hasn’t seen a big improvement, but I don’t think she persevered for long enough to see results, I've said it can take weeks to recover...

It’s got worse since weaning, not better.

He’s currently;
He is on a generic anti-reflux formula
Is projectile vomiting several times a day
He only sleeps upright in the pram
He only sleeps for 2 hours at a time
He screams inconsolably for several hours a day
Has terrible wind
Has a distended tummy
Is immediately and violently sick after yoghurt

She basically describes him as ‘the devil’, he’s constantly miserable, clawing at her and crying.

He doesn’t have eczema and he’s not underweight, so he doesn’t seem to meet the GP's ‘symptom checklist’

She’s at her wits end.

She’s finally spoken to her GP again tonight who dismissed her again and said she can try reducing dairy in his diet if she wants, but to stick with the aptimel anti-reflux.

GP has taken 50+ hours to return her call from Monday.

She saw an NHS dietician months ages ago who said because he wasn’t underweight, it simply couldn’t be CMA.

She has been trying to wean and he’s constantly sick.
😟

Am I right in thinking this is all terrible advice?

I obviously can’t help her teach him to sleep while he’s in pain and I’m at a loss for how to progress.

Please give me some advice of where to signpost her?

I suggested Allergy U.K. helpline but she doesn’t have the energy reserves to make a fuss because she's so exhausted.

Am I right - this isn’t normal ‘infant reflux’?

I’m certain that she needs to do a strict elimination diet but the doctor just suggested she ‘could try reducing dairy’ while telling her to continue to use a CM formula.

To me this is like saying to someone with a peanut allergy not to eat dry roasted peanuts but its still ok to eat a bloody Snickers?

Does this sound like the right way to progress, regardless of what the GP has said?

I’ve told her to use the unopened Similac she still has, to try oat milk in his porridge and to cut out all dairy for at least 10 days and to avoid soya milk incase he reacts to that too.

Obviously I'm not a medical professional so it feels wrong to try to override a GP, but this feels wrong to me.

Does this sound like the right advice to give her?

I need to give her the confidence to get to the root cause but she’s been so constantly undermined and unempowered even by her boyfriend that’s she hasn’t got a voice to advocate for him and for herself.

Am I missing anything?

I can't help her baby to learn to sleep while he's in pain, but she is struggling to 'get' that we need to fix the cause of the pain and even dairy free weaning is overwhelming her.

Any advice much appreciated!

Thank you in advance!

Am I also right in thinking that Similac is partially hydrolysed and Nutramigon is extensively hydrolysed and made from cows milk.
Therefore if these didn't work then the only thing left to try is an Amino Acid formula such as Neocate?

From experience with my own children I would say it sounds like you’re right. I don’t know if all areas have them, but the specialist feeding health visitor was the one who diagnosed my youngest. She said it’s often missed in children like her, although she was having very poor weight gain, her skin was ok at that point. She’s not nothing to lose by trying to cut all dairy out. I’d be pushing for a second opinion and a third of necessary in her shoes. They can’t just leave a baby in pain like that, it’s cruel, and will be torture for the Mum too of course.

You sound spot on to me.
My 12mo has CMPA and is on the 98th centile for weight, so failure to thrive is not always present.
Before eliminating dairy, my son would spit up 30 times a day, had bad reflux and did also have eczema. He wouldn't lie on his back ever.
The advice to 'cut down' dairy is ridiculous. It needs to be completely eliminated from mother's diet for 6 weeks minimum if mum is nursing. This includes hidden sources such as milk baked into cake etc.
50% will also react to soy so may be worth cutting this out too.
The fact he vomits after yoghurt would make me think he has an IGE allergy to dairy which needs to be discussed the the GP. He really shouldn't be given dairy until speaking to a GP with a good understanding in allergies. Sounds like the current GP isn't up to date and I would request a 2nd opinion.

Oh and he definitely shouldn't be on a CM formula. I've heard the NHS can be stingy when prescribing others as they are expensive so she may need to push for this (or but it herself if affordable).

I think you are spot on too. The weight thing isn't relevant as sone children with CMPA over eat as they confuse the stomach pains with hunger or they feed for comfort.

Also agree that you can't sleep train a child in pain.

I think that using a DF formula or at least a well hydrolysed one fir at least 2 weeks should help. I have CMPA and it takes 2 full weeks fir my gut to heal if I gave any dairy.

How good do you think she will be with eliminating dairy from his diet?

I can help with a few food suggestions or websites if you want

Soya allergy often goes along with CMPA. Egg allergy is also very common (usually outgrown).

Lonzoprazole/omeprazole similar, dosage needs to be spot on though. Too low a dose and no help, too high these meds can cause insomnia!

May not be allergy only, often other issues too. I'd suggest by passing the local NHS services and going to a paed gastro privately. I wish we had done it a lot earlier.

Definitely sounds like CMPA to me too and I have two DC with it. I brought DC1 to 2 different Paediatricians privately (not in UK) and both said they diagnose CMPA based on symptoms but also by checking their bum to see if there is a very red ring around it. So that could be something to mention too.

I’d also avoid soy like the previous poster said until she gets things sorted (although it doesn’t cause issues for us it does for lots of CMPA babies). She needs Neocate or Nutramigen Puramino (not the regular nutramigen) as they are totally hypoallergenic.

@pippinstar so interesting about the red ring, my multi food allergy DS has this before diagnosed and I was still eating dairy (and nursing him).