Nutramigen and CMPA, when does it work? :(

[Lunardreams]

My LO has had horrendous reflux and bowel issues since 2 weeks old, he is now 4 and half months. We tried two trials of aptimil pepti however he had awful reactions each time. We settled on comfort milks however he never tollerated it well and he continued to get awful reflux and has always had a red rash over his cheeks, chin and arms. Omeprazole helped but he was still miserable. I'm now trying nutramigen, luckily he seems to like it however his face is now redder than ever before and still appears refluxy. Im currently giving him two ounces of his new formula and the rest his old one, upping it an ounce each day.
He was breastfed until 6 weeks however had tonstip as his reflux was horrendous and his skin was awful when bf.
Im at a loss and not sure what to do next if this formula doesn't make a difference.

It's super hard, hang in there!

I found that it took a good 2wks after all dairy was eliminated for the reactions to completely stop, but day 4-5 we started to see some improvements on reflux and mucousy nappies.

I guess until you have swapped completely to the new formula, you won't be able to tell if it's working.

Thank you, you're right. Will need to give it time until he is completely switched over to see if it's helped. Im just impatient as I'm desperate for this to help him. I'm really glad it worked for you :)

With my children (both cmpa) nutramigen didn't work. My son couldn't drink it, it made him vomit a lot. They both ended up on neocate.

My daughter had horrendous reflux. She finally grew out of it at 2.5 years old after having a tongue tie released.

I hope you get to the bottom of it, good luck x

Also my daughter went through reflux meds- Gaviscon, ranitidine, omeprazole and then finally lansoprazole worked x

Do you think it would be unreasonable asking the HV or GP for a dietitian referral id the nutramigen doesn't help his reflux? I really do think he has an allergy given his skin as it flares up after feeds since two weeks old, I really had to fight for the pepti and nutramigen trials as the gp and hv do not think its allergy related. His reflux is horrendous and he isn't able to lie in his bed at times and he doesn't get a lot of sleep overnight or during the day as he wakens upset most of the time.
I do paced feeding, sitting up after meals, thickened formula, you namen it we have tried. I'm just feeling really done with it all and Im so so sad for my LO when he's upset and sore.

Bless you, no I don't think it's an unreasonable request. Is it you first baby? Only reason I ask is my first wasn't diagnosed until he was 13 months old, we saw several doctors told it's nothing. They did skin prick tests which doesn't show up non ige allergies. He was only referred that after the hv saw his nappies explode up his back and the smell and skin flare ups. Definitely push for it. The thing is with nutramigen, the way our paediatrician described it is; it still has the cows milk protein in but it's been damaged so the body doesn't recognise it. Where as the neocate doesn't have it in at all.

For reflux, My daughter used to have the cot raised at the head end. Nothing really worked with her either. It was awful. She only really slept if I held her or carried her in a sling. I really feel for you. It's a totally different cry with reflux. I found a video last week as we had to record her for the paediatrician. It broke my heart I burst into tears. If you can do that, it would help them see and it is evidence for you to get somewhere.

I'm so sorry you and your wee ones went through that, it's so stressful and heart breaking seeing your babies so distressed.

Thank you for the advice, its really appreicated and comforting that I'm not alone. Since upping his new milk his face is looking much better and I think this is the first evening since he came home that hes smiled and been happy. Keeping my fingers crossed that this is a turning point. Hes also been refusing his comfort milk this evening and is drinking her nutramigen quite happily. Don't want to get my hopes up too much just incase he gets a flare up again tonight.

Thanks again :) really appreicated it.

Oh and yeah I'm a first time mum

Push for neocate

Neocate all the way. Nutramigen still has some dairy in it, albeit very very small, but some babies still react.

Thank you for suggesting neocate, my friends LO is on Neocate for cmpa as she reacted to the other formulas prescribed. She had it prescribed by the dietitian as neocate can only be prescribed by the dietetics team at my healthboard. Im going to ask for a referral on Monday.
I thought we had turned a corner but his reflux was back this evening however it didn't last as long as it normally does. The only big improvement is that his skin is so much better. The difference in 24hrs is amazing. Will attach pics below, does his face rash look like anything your LO's had with their allergies? Will post below

Before

After

And one of his full face a week ago

My lo is breastfed but can't tolerate dairy, eggs, soya, coconut or tomato through my milk.
Last week we had an awful week and we got some formula prescribed she only had 1oz but we had the most horrendous night ever. I had a look at the ingredients in the formula and it has coconut oil in. From looking at other formulas nearly all of them have coconut in

I'm really sorry that you and you LO are having such a rubbish time at the moment :(. Feel for you that shes not able to tollerate the hypoallergenic formulas. Its so so stressful and sad when they're really distressed and unhappy. Do you have dietetic input?