Early improvement on a TED- relapsing?

[LisamommyRN]

My EBF DS2 developed bloody mucousy stools at 5.5 weeks old- I went off dairy and soy right away, then eliminated the top 8 plus corn and all legumes about two weeks later when I didn't see improvement. After a week of that, when the stools started looking worse (more frequently bloody, brown, stinky, and frothy) I went on a TED- turkey, sweet potato, pear, and zucchini, safflower oil, sea salt. I've been doing this for 5 days- and for the first three I saw improvement- stools were yellow and sweet-smelling again, even if some were still mucousy. Then yesterday and today, stools were more frequent, browner, and bloody twice yesterday and twice today.
Sigh.
It was much easier to keep to the diet when I thougt I was seeing improvement- now I'm so tempted to change things up, even though I know that the gut can take a while to heal.
The GI that we saw yesterday commended me for my committment, and said not to even look at the diapers for two weeks- it takes that long to heal. Of course I can't do that... I'm a little neurotic about it- I want to interrogate anyone else who changes his diapee as to the color, odor, and texture of his poop!
So I know I should probably stay the course, but I'm afraid that some thing on my TED is still bothering him.
Any ideas/opinions?
TIA,
Lisa

[mamafish9]

I'd try rotating foods out of your TED one at a time (replace with something else). I'd start with safflower oil (very high in omega 6s, which can be inflammatory, so that might be part of the problem).

One other possibility is that you have a different turkey source the last 2-3 days, and possible cross contamination (some places spray the meat with corn, and lovely stuff like that), or issues from the turkey feed...

[LisamommyRN]

Thanks so much.
So you think 5 days is enough that I should be seeing improvement? I tend to think so, too, but the GI said give it two weeks, and my husband is inclined not to change anything until we talk to her again on Wednesday...
I'm starting to feel a little panicky, today is the third day in a row of increasing, worsening, bloody poops. And I'm halfway across the country from home with slightly less control over my food than usual (at my parents). I don't mind being patient, he doesn't seem to be in any pain, but I don't want to do so much damage to his gut that formula is the only solution... I just don't know what the right action is.
Sigh.

[mamafish9]

Nothing you do in the next two weeks will be that damaging to his gut, but yeah, worsening poops, you definitely have something going in he doesn't like. And guts don't heal in two weeks either . There you go, that's my mama wisdom speaking, fwiw. GI docs have a pretty poor accuracy batting average on this forum - I'm glad you're getting some support, but in this case, I think you need to look at the evidence in front of your eyes. I agree that sometimes improvement can be slow and not all linear - but getting worse? That's not a sign of gut healing.

[LisamommyRN]

That's how I feel too, I was just driving myself crazy eliminating this and then that with such unclear results.

The nutritionist from the GI's office called today to check on me- she suggested dropping the safflower oil, turkey, and zucchini, and adding olive oil, chicken, and carrots. We'll leave the sweet potatoes and pears alone for right now. She thought Neocate might be the right way to go .

So we'll see.
Thanks again, it helps so much to have other moms to "talk" to.
-Lisa

[kjbrown92]

Why don't you just substitue one thing at a time (like chicken for turkey, or even better lamb for turkey)? It seems more confusing than switching out three at a time.

[mamafish9]

I agree with Kathy, I'd switch one food at a time. And I think it's WAY too early to be contemplating neocate (which doesn't have anything near the 100% success rate the GI's make it sound like...).

When we did our TED, DS was reacting to 2 of the 6 foods I was eating. Once we got that figured out, we got to baseline and off the TED very quickly. So you could be just a week or two away from having this figured out, and starting to trial foods back in. Hang in there!

[rhesp1212]

I agree with all the PP's....just wanted to add to make sure your turkey is either organic pasture fed turkey or atleast organic, minimally processed turkey (no hormones, etc.). Also, check all of your vitamins and supplements that you might be taking for hidden ingredients (espeically soy and dairy).

Since you saw some improvement in the beginning that means you did eliminate something that was intially bothering him. But worsening to me would say that he is sensative to something you have added in or increased in your diet. My first would be the safflower oil switch to olive oil. That said, some oils are cross contaminated and can cause problems as well. For example, my son can tolerate certain brands of olive oil, but Bertolli brand sends him into a horrible reaction!!

Also, double check your sea salt to make sure it doesn't have any anti-caking agents in it. Those are usually derived from corn!

I also agree, Neocate is not always the answer....my son had a HORRIBLE reaction to it, EO28 splash and Elecare. Breastmilk is always best for baby if you're willing to work for it!!

[dannic]

Hang in there, mama! I agree that I would only change one thing at a time and journal. And I would use neocate as a last resort.

[nicole_marie]

Originally Posted by LisamommyRN

That's how I feel too, I was just driving myself crazy eliminating this and then that with such unclear results.

The nutritionist from the GI's office called today to check on me- she suggested dropping the safflower oil, turkey, and zucchini, and adding olive oil, chicken, and carrots. We'll leave the sweet potatoes and pears alone for right now. She thought Neocate might be the right way to go .

So we'll see.
Thanks again, it helps so much to have other moms to "talk" to.
-Lisa

Are they sure it's allergies? Have they considered some of the other common reasons for blood/mucus in stools? I'd certainly want to rule those out before trying Neocate. My son was on Elecare and it costs up to $18,000 a year. What about a trial of an amino acid supplement? My son takes L-Glutamine for GI issues and it has been an absolute miracle...we saw results in 24 hours. If you do decide to try Neocate, consider pumping during the trial so you don't lose your supply. Maybe a 2 week trial will be enough to get things on track so that you can get back to nursing? (((hugs)))

[LisamommyRN]

Thanks!

Thanks so much everyone for the thoughtful and supportive responses. I'm working on a corn sensitivity theory right now, we'll see how it plays out. I'll keep y'all updated.
-Lisa