milk protein deficiency

Mbitner

The doctors are leaning towards the dx of milk protein deficiency.  Does anyone have experience with this??  They said he has to be on special formula etc.  They are also going to continue to rule out some other things with the upper GI tract test and a scope.  Has anyone's babies had to do this?  We will still be at the Children's Hospital for another couple days....at least they are monitoring him well.  He also is hooked up to pulse ox and apnea monitor around the clock.  Thanks!

 

 

SJC1984

Both of my babies had to be on Alimentum (and by the way, the ready to feed works better for us, is thicker I think, which helps it stay down).  Our DS1 outgrew it, but my DS2 is just 3 months and is still on the Alimentum RTF and probably will be until he's at least 6 months.  It's costing us around $9 a day!!  Some babies even have to be on Elecare or Neocate products because their allergy is so bad, and it's even more expensive!! 

breezy0629

Well, it sounds like it was good you went in. Are they giving him nutrition via IV until it gets back to normal? I have no experience.... Make sure you ask the nurses all the questions you have - they might not volunteer information. Do you know anyone who lives close??

axh2277

DS has a milk soy protein allergy, delayed stomach emptying and severe reflux and is on neocate as well as prevacid and pepcid.  We had hoped by 1 year to have him off of the neocate, but he's 17 months and still on it.  I saw your previous post and I was going to also suggest making sure they check for esophagitis eonionphilic (also know as EE) if they do an endoscopy.  Its a condition that mimics reflux and MSPI, but doesn't respond to medications used to treat reflux.  According to DS's allergist most kids with the condition do really well on neocate which is another reason why we're not in a rush to wean him off of it.  Here is a link to Children's Hospital of Philadelphia page on the condition.  DS's endoscopy in December showed that he had EE, but on the neocate its under control. He also had a ph probe which confirmed the ph levels of the acid where very high.  Let me know if you have any questions...I'm happy to help in any way that I can since we've been down this road.  GL!

https://www.chop.edu/service/allergy/allergy-and-asthma-information/eosinophilic-esophagitis.html#

BensBride41604

Being in the hospital stinks.    Don't be afraid to tell them to stay out if you need to get some rest.  They don't have to do vitals every hour if your baby is stable.  When DS was in the hospital, I told them not to come in the room at night unless his heart stopped or he couldn't breathe (which I would know about because I was sleeping in his crib with him).  If he's hooked up to monitors, they'll know if something isn't right.  You need to get your rest and so does your baby. 

As far as the protein deficiency goes, is that the same as an allergy?  I'm going to assume so since everyone is talking about special formula.  One thing you may want to look into is goat's milk.  DS has a protein allergy and couldn't be on any formula or cow's milk and when I was nursing, I had to cut out all milk.  But we tried goat's milk and he is doing beautifully on it.  Goat milk is the closest to human milk and it's much easier for their systems to process because the proteins are more easily digested.  It may be a better alternative for you than formula!