Still reacting to amino acid formula!! Please help!!

[twirlymuma]

Where do I begin!
I have a 4 month LB. Since he was about 2 wks old we have had problems with feeding. We thought he might have a milk allergy (throwing up, wind, failure to thrive, rash) this was confirmed by a Dietcian. We tried nutramigen for 2.5 months. To begin with things improved but then symptoms returned. Switch to alfamino, he is still reacting! The sickness has calmed but the eczema has gotten so bad! He still has mucous poos and they are more explosive! He cries at the end of a bottle now and has bad wind and refuses to settle at night. I feel there is something in the formula that's not agreeing with him but I don't know what???
He also has reflux and is on ranitidine for this.
Anybody had anything similar? Any suggestions? Becoming so desperate now, I'm so emotional due to lack of sleep and feel so hopeless. I don't know what to do??

[canteatcustard]

completely changed protein type allergy milk? not partially changed?

if so carry on. The gut will take some time to heal after the previous formulas.
I think a month is suggested as best time to give a allergy milk time to work.
I would only stop if he isnt thriving and loosing weight. get him checked by GP for peace of mind.

The gut is inflamed by poorly digested milk going through system, and this does take time to settle.

I know how tired you feel, have been there.
What else have you tried? e.g proping cot legs? slings ?
what other support have you had?

[Pocketsizedpixie]

If you've trialled the alfamino for a few weeks you could try asking to switch to neocate, which is also amino based. I think they are very similar, but a slightly different recipe might suit him better?

[fraggle84]

Neocate

[GwendolynMary]

Yep, neocate is more broken down than alfamino. Alfamino is not for true allergies, rather better suited for intolerances.

And ranitidine can cause loose bowels, so keep that in mind. Have they discussed omeprazole for the reflux? Getting the stomach acid under control helped us enormously.

[RayofFuckingSunshine]

Gwen - I thought alfamino and neocate were both completely synthetic formulas? The only difference being the oil and sugars each company choose to use.

[GwendolynMary]

Ah, I'm in Oz and used Allerpro. The paed told me it was the same as alfamino/pepti jnr, which wasn't as broken down as neocate. Possibly very different on the other side of the world, my apologies!

[RayofFuckingSunshine]

That's okay then! I was having a slight panic as my DD has alfamino on prescription as a milk substitute in foods, but we haven't used it yet (bf) We tried the hydrolysed Pepti and it ended with her in hospital so you saying that made me panic.

[GwendolynMary]

Oh how terrifying, you poor things. Hospital sounds awful! Good luck with the alfamino when you do try it.

Have you planned your dairy binge when you (ages from now I hope) finish BF? It got me through some long, long nights of feeding, dreaming of cheesecake topped with ice cream...

[RayofFuckingSunshine]

It's how I spend my life. Dreaming of pizza and chocolate. Waitrose does an amazing chocolate ice cream mixed with orange sorbet that will probably be my exclusive diet for a week when this is all over.

[Grain76]

Tearing our hair out here! Our 12 week old has been on Neocate, Pureamino and now Alfamino for CMPI, but is still reacting - terrible wind, constipation, tummy cramps, constant crying . She is on high dose reflux meds - domp, ranitidine and omeprazole... Has anybody any experience of their little one not settling on the amino acid formulas?? She was started on Neocate at 3 wks and then tried the others as there was no improvement. She's been scanned for pyloric stenosis and intussusception and nothing like that is the problem... No idea where we go from here, her dietician and gastroenterologist are pretty stumped too..

[Whalleys]

Hi, I read you had trouble with your baby. Our child is 4 months now and has the same symptoms yours has. We are at our wits end, the doctors don’t seem to know what to do. We are on the affimino and nothing has changed. What did you end up doing or did you get a diagnosis ?
Please help

[skinade]

Hello my baby is suffering with the same symptoms. Just been prescribed SMA Althéra. Has anyone had success with their prescription milks?

[Elofran]

Hi all,
Just came across this thread and thought I'd post as I have lived the intolerance/nightmare for 3.5 years with my daughter and am now going through it again with my 11 month old son.

I've read a reoccurring theme on this thread that babies aren't tolerating the amino acid formulas well and I'm so pleased to see that at least some of you are being believed by your doctors.

When my 3.5 year old was a baby she could not tolerate breastmilk on a diet of chicken, rice and a few select veges and failed every formula trial. Most doctors and paeds wouldn't believe me that she wasnt tolerating any of the amino acid based formulas and eventually due to desperation I started diluting her neocate gold by 50% (4 scoops per 180 MLS instead of the 7 scoops) and basically doubled the amount of bottles I fed her each day. This was the only way I stopped her screaming in pain 24 hours a day. 3.5 years later and she is still on diluted neocate and can only tolerate 5 foods but she now sleeps and is no longer in pain!!

Diluting formula is never recommended by a doctor but if you are at your wits end it might be worth considering.

I've also noticed that a few posters are also dealing with the upper GI tract issues/reflux and my only advice here is to make sure the meds you are feeding your baby are compounded and free from additives such as stevia and sweeteners. I hear so often that parents assume their medication is free from nasties because it's been compounded but this isnt always the case.

I'm located in australia and have my 11 month currently on omeprazole for reflux and the non prescription rice based formula Novalac Allergy.

[JiltedJohnsJulie]

@skinade so sorry to hear that you and DD are struggling. I think you might be better starting your own thread though as this one is from 2016

[Emmak20]

Just read your post from back in 2016.... I’m now going through the same thing with my little girl who is nearly 12 weeks apart from she isn’t sick. She’s got silent reflux symptoms but also hates being held and always is straining or doing stomach crunches. She is sooo windy! She burps well and farts all the time. During the day when she’s constantly kicking she can pass it but when she tries to sleep it’s like she can’t get to sleep because of so much gas. If she does get to sleep she’ll keep waking up thrashing about to pass wind.
We have tried so many formulas and now on alfamino to which we’ve been on for nearly 2 weeks. She’s still the same and her eczema is still appearing. I just want her to be able to sleep properly bless her.
How did it all work out for you in the end? How did you treat the wind issues?

[gda20]

Hi Emma,.

Did you ever get a response in your message above. My 7 week old soon is going through the same and it’s just horrific x

[JiltedJohnsJulie]

@gda20 you might fe better starting your own thread as this was is from 2016.