Neocate trial?

[Anonymous]

My daughter will be six months old on December 5th and we are having issues with her formula.

I will kind of start at the beginning. She was tube fed for the first month of her life and finally took a bottle after a visit to the chriopractor. Sometimes she goes through periods of food refusal still but they are less than what they were. She has been on zantac twice a day since she was two weeks old and prevacid (15mg once a day) since about a month ago. The doses of her meds are still being adjusted to see what works best for her but she is doing better than she was but still arching alot, NEVER sleeping, comfort feeding, vomitting, crying, frequent hiccups…. But still, less than she was. And we just started a new dose of zantac before bed so we shall see how this round goes.

Currently, she is on nutramigen. She has been on it for four months now. The doctor told us to switch to it because babies with reflux often tolerate it better. I suspected a MSPI but the doctor wasn’t sure and knew nothing about that. (She sees a family physcian and a peditratican. The wait for a GI is over 5 months. :|).

In the past month and a half, she has been comfort eating. She will eat up to 60 – 70oz a day. She is just eating and eating. Sometimes she spits up and sometimes she doesn’t (she vomits up at least 15oz a day). Often, it will come up curdled hours later.

She NEVER sleeps for more than twenty minutes at a time and is always waking up gassy, crying in pain, needing to burp/puke, eat. She eats all day and all night.

Her poop on nutramigen is PURE liquid (it never has any solid bits in it). Like pour out of the diaper liqud. She will poop fiften – twenty-five times a day and it is often filled with strings of mucus. I haven’t really SEEN blood it but it is has never been tested. She poops after she eats and then likely three – four times before she eats again. She is always pooping. Right before she poops, she screams out. And the gassiness is nuts. She cries in pain and squirms around trying to relieve it.

She has kind of started solids but has yet to eat anything. She has NO interest in them and just spits and gags. I have tried to thicken her bottles but she chokes, gags and then refused to drink anymore but cries from wanting to eat.

I saw a ped. on Thursday who said to try switching her back to a regular milk based formula since the MSPI has never been proven.

WELLLLLL. I fed her the bottle with one oz regular milk formula and 5 oz nutramigen at 4:40pm and by 5:10pm, we were in an abmulance being rushed to the children’s hospital after she violently vomitted everything in her (including stomach bile), broke out in hives and stopped breathing. I think that is confirmation enough. Since that reaction, she hasn’t really eaten anything and when she does it it comes right back up.

I feel like neocate/elecare might be a good option for her but the ped. says since she is growing fine (18lbs at almost six months), I should just suck it up and deal with it. He says she will outgrow it and her formula is fine, I should just not feed her. ???????????????

Am I crazy? Would a neocate trial be a good option here?

[Anonymous]

Poor baby! My son has MSPI and I have been on an elimination diet for about 8 wks…he has always gained weight great, but that doesn’t mean he DOESN’T have MSPI!! I think the same for your LO. From all the symptoms you’ve described (diarrhea, arching, never sleeping, comfort feeding, vomiting, crying, hiccups and gas) it definitely sounds like your LO could possibly reacting to the broken down milk proteins in the Nutramigen (some LOs still have trouble digesting them, even though they call it a hypoallergenic formula). I would recommend trying an elemental formula to see if there is any improvement – like I said even if your LO is gaining weight that doesn’t mean she isn’t in pain! Elemental formulas are the best formulas for babies with allergies because they don’t contain any milk proteins; instead they are made up of individual amino acids (the building blocks of proteins) which are easiest to digest. And it’s just my opinion but if your Ped isn’t listening to your concerns maybe you should get a second opinion from someone who will, you’re LO’s best advocate!

[hellbennt]

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

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