Failed Soy

Well, we were too optimistic, too soon. Apparently Hallie cannot tolerate soy.

She was fine until Wednesday afternoon (if we forget about that Sunday night vomit). We stepped up the amount of soy to 2 ounces of milk on Wednesday, and after lunch she vomited. Still, this could have been because she had cried following her blood draw (her doctor's appointment went great---her lungs sound clear, her weight is up to 26 lbs again and she is 33.5 inches tall. This places her at the 42nd percentile for weight and 44th for height. The doctor has no concerns about her cognitive ability at this point and was totally pleased).

Anyway, Wednesday night she seemed fine with more soy milk (another ounce) and yogurt (an ounce). But Thursday is a different story. She had diarrhea on Thursday afternoon, vomited after dinner (in public---the restaurant was nice, the patrons, not so much. Note to readers: extend sympathy, or at least simply ignore, retching and vomiting kids. Do not screech "EWWWWW", especially if you are a seemingly mature 30-something-year-old and above), had diarrhea after vomiting, woke up with diarrhea on Friday (necessitating another bath, a changing of the changing table, another load of laundry, and a shirt change for mama who finally figured out that the lingering smell was coming from herself). Then more diarrhea (3 bouts and counting, if you must know) and another vomit added in for good measure this afternoon, replete with ashen gray pallor. Fun, fun, fun. Little in the way of food eaten, but she is hydrated (a couple of wet diapers even with all that) and no sign of lethargy or anything like that, so we have no reason to believe she is sick.

We were careful to buy brands that did not contain rice (amazing that many do), so that's not the cause. And while she is teething (all 4 canines have finally broken through), we've been through teething before and it has never involved diarrhea. So in the absence of any other factor, we have to believe that it's soy that's at the root of all this and that we just hit a critical mass in terms of the amount she needed to trigger an enterocolitis event. We'll see. If we're correct, she should improve markedly in the next 36 hours and go back to baseline within 72.

Meanwhile, we're pretty dejected around here because we were so hopeful that soy would at least provide Hallie with another food option that was protein-rich. Not to mention it was wonderful to think that she might have FIVE food options. But I guess it wasn't meant to be, and while she can certainly tolerate trace amounts of soy (not true of rice and buckwheat and milk), it's important to strip her diet of allergens if we want a chance of her outgrowing all of this.

Anyway, this post preempted and eclipsed another post that I will be writing about Hallie's birthday week. Hopefully things will run their course tonight and I'll feel better about writing something more upbeat tomorrow after Hallie's big birthday bash.

You're Fired!

Back before Sharon and I were micropreemie parents and had developed a cult-ish love for Rachel Coleman and her amazing, emmy-nominated Signing Time series on PBS, we were big-time fans of Donald Trump's The Apprentice. So hopefully Mr. Trump will forgive my use of his image and his (probably) not-yet-trademarked phrase (I only believe this lack of trademarking to be the case because of a very clever adaptation of The Apprentice on our other favorite show, Sesame Street, when the street is visited by Mr. Grump).

In any event, neither of us are fired. On the contrary, we just ditched our private Speech Therapist, and in our assessment, not a moment too soon. Those of you who know me in real life (and my virtual buddies have probably picked up on this), I have always had a bristly streak, and my penchant for irritability has only been enhanced by being mama hen to my precious nearly two-year-old surviving micropreemie twin. Sharon is the cooler and more level-headed of the two of us. So, when Sharon gets up her goat (an all too appropriate phrase for a mommy who serves her young one at least three servings of goat milk a day), you know it's bad.

In any event, it's gotten harder and harder to deal with our now-former speech therapist, whose poor listening skills (as well as pronunciation skills--you'd think by now she'd realize our daughter's name is pronounced Ha-lee and not Hay-lee) are rivaled only by her organizational skills (she spent about twenty to thirty minutes of our session on Sunday trying to turn on a computer program) and her medical diagnostic skills (which are lacking, since she does not have an MD after her name). Although she wanted a renowned nutritionist (who proved herself a good listener and who never once said we should ignore the medical establishment and disregard the specialists at CHOP whom we see) to confirm her one-cure-fits-all dogma, this did not happen. The nutritionist did in fact pay careful attention to Hallie's serious diagnoses (particularly where food allergies are concerned) and devised a sensible plan for moving forward with Hallie's nutritional program. But this did not stop our former therapist from recommending that we move Hallie off of the foods she tolerates well onto foods to which she is highly allergic and to which she responds with rolling bouts of anaphylactic GI distress.

Let's backtrack a bit for a moment: yesterday morning, I decided to give Hallie a bit more rice than she had on Saturday (ten grains or so) or Sunday (five---she refused the rest, though went on to eat other food quite well). I got about a tablespoon into Hallie when she tossed the rest off of her tray. At the time I thought she did not like the texture or was just being a toddler (she did chew and swallow that tablespoon quite nicely). I should have known that Hallie is the one who should always be the one who lets us know when something is or is not okay. Right after I fed her a good-sized (for her) breakfast of two jars of fruit (apples and pears) and a decent amount of goat milk (a few ounces) and goat yogurt (another ounce or so), all of which she ate with gusto, Hallie began to vomit violently. At first neither of us were sure the culprit was rice (I consulted with Sharon about this right after it happened). But after she became quite congested and wheezy (sounding a lot like she used to when she was on cow milk or when she ingested other allergens during our failed food trials) and proceeded to vomit again three hours later (I gave her no more rice for lunch), to the point of turning purple and dry heaving at the end, and then turned a deathly gray pale color (similar to her coloring during her entire first year of life), we knew that she was having an FPIES reaction. She was unable to get back down to a nap (the second vomit happened mid nap) or settle down generally, and there was a large amount of undigested rice in her stool on top of all of this. We had speech therapy yesterday evening, and Hallie was a mess by the time we got there and less than focused as a result of all of this. We explained to our erstwhile therapist quite clearly that Hallie had failed her rice trial (not hugely surprising since rice is one of the biggest trigger foods in FPIES kids, along with most of the other typical first foods). When the therapist asked us if we brought food for Hallie to eat, we explained that her system needed a bit of a rest.

This all would seem logical to any intelligent listener, but not our intrepid, now former speech therapist. A logical, intelligent professional would realize that FPIES (a condition about which I forwarded our former therapist a concise, to-the-point synopsis written by leading allergists for lay people) is a serious medical condition and that, at the very least, it is not worth jeopardizing one's license, not to mention the health of one's patient, by ignoring this diagnosis. So imagine our surprise when we received an ultimatum via email this evening telling us that, if we refused to put Hallie onto a diet that consists of rice protein and coconut oil (to which she is also dangerously allergic), that she could no longer treat our kid.

I had only one thing to say to this: "You're fired!"

That felt really good, and we are happy to be free of a major stressor in our lives. We have learned a few good tricks for eliciting speech from our experience and even more about how to interview a speech therapist. Hallie is a visual learner (hence her mimicry of our beloved Rachel Coleman who has not only taught Hallie to identify and approximate signs for most of the letters of the alphabet, most colors, and innumerable words, but also how to approximate SAYING them). We need someone who will play to the strengths that Hallie demonstrates (visual learning, and learning while in motion) while respecting her medical diagnoses and the wishes of her parents.