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Wednesday, April 16, 2008

Food Protein Induced Gastroenterocolitis

I wish there were a cute, easy-to-remember alphabet-soup acronym for this one, but alas there is not. So we are left with the clinical name of the condition that Hallie has: food protein induced gastroenterocolitis. Quite a mouthful (though ironically it means that fewer things can be put in her mouth and, more importantly swallowed).

On Friday, Hallie had a series of patch tests done by her excellent Allergist (good thing we like this division at CHOP, because my sense is that we are going to be seeing a bunch of them over time). She was none to thrilled at the placement of the test disks (largely due to the fact that the smell of a freshly-opened alcohol pad and the sensation of being held down summons up none-too-fond memories of RSV shots). But she did okay with them all weekend (except for the fact that she could not bathe all weekend and had a few major poop blowouts and vomiting episodes, but I shall get to the latter later).

Monday morning, bright and early (like 8am), we brought her in for an interpretation of the findings. She definitely came up positive for egg allergy (no surprise there--she vomits at the mere ingestion of a tiny quantity of egg), and +/- (which amounts to a borderline positive) for barley and wheat (with barley being more reactive than wheat). Milk (cow) was negative, but has a very very high rate of false negatives, so her Allergist feels that clinical observation is a positive determination of cow milk protein allergy. The only disk that was negative (she had six patches done, with one being a blank) was soy, and even that is inconclusive so we need to do a soy milk trial to see if that is accurate. And, oh yeah, she did not react to the blank, so she is not allergic to the plate itself. Just what's on it, I guess.

Sigh. Meanwhile, at Speech therapy on Sunday, the therapist fed Hallie a pureed pudding of cream of buckwheat and fruit. This led to immediate, violent vomiting. At first we attributed this to Hallie gagging on a new texture. But then she vomited more at home that night. And then had another violent vomiting episode (with lots of choking and even turning reddish purple because she was retching so hard and couldn't get air into her system) around noon on Monday, which had me so frightened that I almost thought I'd need to call 911. This was not pretty, but Hallie recovered from it and I bathed her (again) and cleaned her up. But she also ended up with all of the other symptoms from the summer-from-hell-that-we'd-like-to-forget: congestion, sneezing, allergy shiners, eczema on the eyelids, constipation, stinky hard off color poop, etc. When I described these to the Allergy folks when I called them today, we got our formal diagnosis.

Anyway, it kills me that we've been poisoning Hallie inadvertently and attributing all of her GI woes to reflux and dysphagia. Both of these conditions go hand in hand with food allergies, as does gastric (and hence truncal) hypotonia (low tone in the GI system that leads to very slow peristalsis and hence delayed gastric emptying). And, interestingly, there also seems to be a casein and gluten connection to Apraxia. So maybe we've figured out a big piece of the puzzle here. (Then again, maybe not: decoding what's going on with Hallie is a bit like peeling a very, very large and complicated onion).

And so, tonight, on the way home, I stopped in at Whole Foods and bought up a host of gluten free snacks (since we have to get rid of Veggie Stix---anyone need any? we have three bags of them--as they contain wheat starch). This is sad, because Hallie just started to ask for "sticks" by name (she has added the words "a stick", followed by her approximation of the sign for 'please' to her vocabulary this week). Fortunately, I did find some (extremely expensive gourmet) potato sticks that don't have gluten and also bought a few other things we can try. Worst comes to the worst, we add them to our very large collection that I have come to term 'the graveyard of foods rejected' (we could feed many countries on this stuff, but only if their citizens can tolerate milk and now various grains).

We suspect that Hallie is fine on fruits and veggies since she doesn't seem to respond to these (the IgE tests come up negative for a lot of these allergies, which makes defining the nature of them maddening). And hopefully we'll be able to figure out if there are any other sensitivities as we proceed. And hopefully we'll be able to do this without putting her on an elemental formula. We'll see. We're definitely going to try to keep a food diary to see if we can determine what, if anything else, triggers a response in her. And we'll keep our fingers crossed.

Sharon and I tried to think about what we fed Hallie back in December that led to that two week vomit-free period, but we can't really remember. We did have two vomit-free days in a row last week (Friday and Saturday) but we don't remember what we did or did not feed her then, either.

Anyway, for you science junkies, here's a description of this from Pediatrics (Vol,111 no. 6, 2003: 1609-16). And stay tuned for more on this, because I'm pretty certain that we haven't gotten to the root of this onion quite yet:

Dietary Protein Enterocolitis
The symptoms observed in infants with dietary protein enterocolitis seem similar to but more severe than those observed in protein enteropathy. Because both the small and large bowel are involved, the term "enterocolitis" is used. The disorder must be differentiated from nonallergic causes of enterocolitis (eg, infection, neonatal enterocolitis). Cow milk protein is the most common cause, but approximately half of patients also react to soy. A variety of additional foods have been implicated, including rice, oat and other cereal grains, and poultry. During chronic or intermittent ingestion of the causal food protein, infants may experience such severe vomiting and diarrhea that dehydration, lethargy, acidosis, and methemoglobinemia may result, and infants may seem septic with high peripheral blood polymorphonuclear leukocyte counts. Resolution of symptoms occurs after appropriate dietary exclusion. A distinct feature of this disorder is that reintroduction of the causal protein leads to a delayed (2 hours) onset of dramatic symptoms that has been used to confirm the diagnosis by oral food challenge. Confirmation of the allergy includes a negative search for other causes; improvement when not ingesting the causal protein; a positive oral challenge resulting in vomiting/diarrhea; and evidence of gastrointestinal inflammation through stool examination for blood, eosinophils, and a rise in the peripheral polymorphonuclear leukocyte count over 3500 cells/mL. Caution is needed when performing oral food challenges because approximately 20% of reactions lead to shock. The diagnosis is usually made without biopsy, but colonic biopsies in symptomatic patients reveal crypt abscesses and a diffuse inflammatory cell infiltrate with prominent plasma cells; small bowel biopsies reveal edema, acute inflammation, and mild villous injury. The mechanism underlying this disorder seems to involve a milk-specific T cell response with elaboration of the cytokine tumor necrosis factor- that may also account for some of the systemic symptoms. That several foods are often involved may reflect a more global problem in immune tolerance for these infants. The disorder is not associated with IgE antibody (but a small subset of patients may eventually establish IgE antibody responses). Considering the high rate of co-allergy to cow milk and soy, treatment with a hypoallergenic formula (casein hydrolysate) is suggested and usually effective (if not, then an amino acid-based formula can be used). It may be advisable to delay the introduction of other allergenic foods, especially grains, in these children. Treatment of acute reactions (reexposure) may require fluid resuscitation, and administration of steroids has been suggested. Most infants outgrow the allergy by age 2 or 3 years, but some seem to maintain hypersensitivity into childhood. Because resolution must be proved through oral challenges that can induce severe reactions, evaluation must be undertaken cautiously under supervision in a controlled setting, usually with intravenous access in place.


Emily said...

Have they scoped her and checked for EE?

I know a couple of kids with this disorder and what you describe of Hallie and her long list of allergies definitely fits the category. It's not a terribly well known disorder but I would think her GI at CHOP would know about it.

Jennifer said...

Ya for answers - funny now that you mention it though... my friend has a FT (42 weeks, I'm jealous) little guy who had much worse stomach problems than my little peanut and it was all due to various allergies. I don't know why I didn't put 2 and 2 together for your cutie. But it can be hard to decipher preemie problems huh?

Sara Cohen said...

I'm sure you are doing this, but a journal of daily foods will be really helpful in remembering what goes in and what doesn't stay in, etc. Good luck! Sara

Anne said...

I'm sure it's a relief in a way to have some idea now of what is causing Hallie's eating/digestive problems. Hopefully the potato stix are a yummy substitute for Hallie's Veggie Stix. For some reason Veggie Stix seem to be the one food these kids "enjoy." They are about the only thing that Eliza has consistently been willing to put in her mouth, although having eaten enough of them I am none too sure what the attraction is!

Keeping my fingers crossed that things improve with Hallie's new diet.

23wktwinsmommy said...

ugh sorry you guys are dealing with this. I hope a new diet does Hallie some good. you ALL deserve happy eating times!

Heidi said...

Not that you have any spare time but if you think of it would you pass me any links on the apraxia/food allergy connection? I'll go google it, too, but I'm interested. Mo had reflux (boys did not) and I'm wondering if it was worse from the milk I was consuming while nursing, her reaction wasn't as strong as C's food issues so now I'm really curious... Anyway, I want to learn more about the food connection and the speech. She's our most "selective" eater by far (still will spit out stuff, problems with some textures) at almost 5 and it's NOTHING compared to preemie feeding issues I hear about but now you've got me wondering if there's some sensory/feeding/allergy/speech stuff all connected?

Anonymous said...

WOWZERS - Lots of info. So glad you guys are coming to conclusions, even though the initial hearing them is probably a bit rough.

Regarding not being able to remember what you fed her to keep her vomit free, I'm going to make my husband read this post, so that he can get off my back about my excel spreadsheet of food/formula intake, vomits, and quanities of all. That'll teach him.

Thanks for being so detailed about this. It makes me wonder about Lincoln's puking that comes out of nowhere and lasts for several days, only to dissapear without a trace just a few days later. I think I'll go through my spreadsheet tonight to look for some corelations.

So sorry for the bad news, but so happy that things are becoming clear...

Anna Sawin said...

Wow, it must, in a small way, at least be a relief to have this diagnosis. Then perhaps you can work towards more of those vomit-free days.

Here's hoping!

Lori said...

Gosh Abby. I have nothing substantive to add here. Just that I am so glad you have some answers even though they lead to more questions.

As always you and Sharon are on top of it, so I am sure you will get it figured out in short order.

Hugs sweetie!

BusyLizzyMom said...

Don't worry i had been indvertantly poisoning Elizabeth as well and blaming the vomiting on reflux. I would keep her away from strawberries and after reading that article I think you should ask for an Epi-pen just in case. Elizabeth has tolerated some of her allergens for a long time and then overnight became allergic, it is weird how it works. I hope for everyones sake that some of these can be outgrown as she gets older. It is funny she had to have disks Elizabeth was lanced and in 15 minutes we were told of her allergies, thats a bit of a pain no bathing. I hope things begin to settle down soon for you guys, poor Hallie it is not too good for feeding when she is having horrific vomit episodes.