NEC or cow's milk intolerance?

Hi everybody,

My wife and I have just had twins, born at 31 weeks 6 days. Both were doing really well and were about to be discharged on Monday, when I found a strange coloured stool in my son's diaper. After some tests it was confirmed as blood, and we were told that the problem was likely either a cow's milk allergy or NEC. Several x-rays were done, and one seemed to cause some concern with the doctors. He is now on nil by mouth, and will be for 7 days.

While the doctors have been really helpful, my wife and I are trying to establish if they are treating for NEC as a 'worst case' scenario, or whether they really think it is more likely to be NEC - we seem to get different answers at different times from different people. There are some odd things about his case, such as the fact that it presented much later than normal (at nearly 4 weeks old) and he is very otherwise very well (no distended bowel or lethargy) and he was breast-fed rather than formula fed.

Anyway - we'd really appreciate hearing any advice or experiences from other parents that have been through this, particularly if you faced the same question over what the actual diagnosis is, and anything we can look out for.

Many thanks,

Mike

 

Wow, I'm sorry to hear you are going through this. It must be absolutely terrifying. My experience was different than yours, but I wanted to respond to give you some support. My twins were born at 31 weeks 5 days and I didn't discover my daughter's milk protein allergy until 4 months old. She never had a bloody stool, but she was in a lot of pain. I'm guessing if you're not getting a straight answer, they are not completely sure yet either. From what I understood of NEC though, it will get much worse quickly, so assumedly no bad news is good news? Thinking of your family, I hope everything turns out ok. :grouphug:

 

I don't know the answer, but hopefully the NEC treatment is just a precaution. My son didn't present any symptoms of a milk allergy until he was 4 months old either. From what I understand it can crop up any time. If your wife is breastfeeding, she will have to cut out eating dairy as well so that your LO doesn't get any of the milk protien. Once I cut out dairy and we switched to hypoallergenic formula for supplementing, we saw a pretty immediate turnaround in the diapers and level of fussiness.

Good luck! Hope all turns out well for you.

 

Sounds like a NEC scare. My son was treated for that I think 3 times. They present with bloody stool and I believe sometimes undigested food left in belly. Mitchell's xrays were inconclusive (showed some air but not too bad). He would be put on antibiotics, xrays every 4 hours or so and nothing by mouth for 7 days each time. I was okay with that because I would rather be overly cautious then need surgery later. It is unfortunately very common in preemies. I hope his clears up soon!

 

Thanks for the responses... We're crossing our fingers.

 

Most docs will just be super conservative with NEC--if they think there is any chance it is NEC--even a very slim chance--they will assume it is NEC and treat it that way. Like Jen said, better to be cautious with something like this. I hope he gets better soon!

 

I'm sorry you're going through such a scare!

My DD had a bloody diaper out of the blue when she was a couple months old. I took her to the ER, they ran a huge battery of tests, didn't come up with anything, and thought it was probably a milk protein allergy. We were BFing, so I cut out all dairy from my diet (including all the "hidden" dairy ingredients out there), and whenever she got formula it was Nutramigen. After a couple months of normality, the drs gave me the green light to try slowly reintroducing dairy into my diet. I did, and it went fine. We'll never know for sure what that was all about.

So anyway, blood in the diaper is not necessarily dire. And I'm really glad to hear that he seems to be doing ok otherwise! You're right, you are out of the highest-risk phase for NEC already. And it definitely helps that he's been BFed - BFing decreases the chances of NEC. ITA w/ pps that it sounds normal for doctors to treat aggressively, since catching it early is crucial. My DS was at high risk for NEC due to prematurity & IUGR, and they watched him like a hawk. In the first few days, as he started getting a little milk, they were pulling up stomach contents all the time. If it was greenish or gassy, they put the brakes on PO feedings for a while, then tried again with tiny amounts. (His first feedings were 2 ml!) Totally normal for them to be careful about this.

I hope he feels better soon (for your sake too!).