Bathing Beauty

Hallie loves her bath. She does a lot of pretend play in the bathtub these days: she washes her dolls and does a great Jackson Pollak painting imitation (I have yet to get this on camera, but will try: this involves having us squirt her with Sesame Street multicolored bathtub finger paints; I swear I poured about a half a bottle on her today, and she kept asking for more). She also does her best Jackie O impression:



The kid won't wear her shades outside in the sun, but loves to have us put them on her in the bathroom so that she can admire herself in the mirror. Very cute, though not terribly functional. Like getting her to wear hats, this is clearly a work in progress.

And speaking of works in progress, Hallie's tummy seems to be doing better today. She had a good day overall and ate a ton (for her, at least), including a lot (probably an ounce or two) of fresh goat cheese, 8 ounces of goat yogurt, upwards of 22 ounces of various 'safe' baby foods, about 14 ounces of milk, and some juice. She visited Cosi, Starbucks, the park, and played in the dirt outside. She used her words, among which are her current favorites: bubbles, go, diaper, ready (which she also uses for the color red), and oopsie. And she ended the day with a great big poop, a word which she just added to her vocabulary today. And she is signing 'want' and 'love.' Finally, no vomit. This makes it day 41 of the year so far. We're holding steady and not changing anything up food-wise tomorrow, though we'll probably add something to the mix to see what happens on Thursday.

Hallie does probably have a touch of seasonal allergies (I am really feeling their impact now) but as of this moment, unless things become difficult for her, we're going to avoid adding new meds (like zyrtec or claritin or whatever). We'd prefer to have her on as few meds as possible, for all of the obvious reasons.

Hallie's cousin, Megan, has a scope today to see if she has celiac disease or any other evidence of a wheat allergy. Megan, who is about to turn 13, is our family's sign language devoteé---she has probably learned more signs than Sharon, even---and she's doing a great job of teaching Adam, Hallie's youngest cousin, how to sign, too. We really love that about her. But she also has a raging case of eczema and tummy aches all the time. We hope the scope goes well and that the ENT or allergist or whoever is performing it gets some answers that provide Megan with relief. Between Megan, and cousins Sarah and Adam and Aunt Laura, who all have asthma, there's clear evidence that there's a significant allergy history in our family. As the lore goes, the only thing that Sharon and Laura's dad was not allergic to and could tolerate was bottled water. This, above everything else, is what has made it clear to me (at least) that what we're dealing with here is not necessarily a preemie-specific issue but something hereditary. Anyway, back to Megan: we wish her luck today and think she is very brave. We've watched scopes and they are no fun, but maybe whatever they discover will make Meg feel better, and that would be a good thing.

PS: Thanks, Elisabeth, for the great Passover pics! I promise to post them (belatedly) soon.

And, on the March of Dimes March for Babies front--we've raised even more money than we had at the time of the march---we're up to $2960...thanks Aunt Ellen and Marc and Jorge!

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.

Hallie at the Drive In

Wow. It's really spring. What better time for a quick zip over to the Drive-In (Home) Theater and a few hundred episodes of Sesame Street? At least that's what Hallie thinks!

Anyway, today was gorgeous--around 70 degrees--and even if I had to work, and got home on the typical late side (around 7pm), Sharon got home early enough (kind of has to, in order to relieve Ami) to take Hallie to the park to hang out with the neighborhood kids. It had rained this morning and early afternoon, so the slide was wet and Hallie stuck to it (making it harder for her to use her blossoming pushing-off skills) but apparently she had a great time and tuckered herself out (despite her three hour nap this afternoon). It seemed like Hallie had a great day, and we'll know better in the future when Hallie can actually tell us something about it.

But we're not complaining. Hallie has been imitating like crazy this past two weeks, and especially over the past few days, and we're (ok--at least I am crediting this (in part) to adding one capsule of Nordic Naturals EPA to her two capsules of Nordic Naturals 3-6-9, and constant speech drilling. Hallie has been saying the following words, on command, this past week:

"kitty" (her favorite, never has lost this one), 'teddy', 'diaper' (sounds a bit like 'pah' sometimes), 'good' or 'good girl', 'cookie' (another favorite), 'buh' (big bird), 'seh-see seet' (sesame street), 'buht' (bert), 'eh-die' (ernie), 'day-dee' (baby), 'am-ma' (mama), 'igg-ee' (piggy), and of course, 'wah-dah' (water). There are probably others, but those are the ones that come immediately to mind. And the thing is: the repetition and imitation is fluid and on command. This has never been the case before, and we certainly hope that it lasts. (And none of this has replaced signing; in fact, tonight, Hallie signed an entire book -- Goodnight, Baby! -- to me as I read it. It was way cute. And very smart, since she has consistently chosen this book as the book she'd like me to read to her when she wants to go upstairs to take her bath and go to sleep and we moms are dilly--dallying).

In this photo, Hallie is saying 'buh'.


Doesn't she have a great pout? I am certain that she will use it against me!

Anyway, we are heartened by the speech gains and are hoping that the SLP with whom we are trying to work privately does manage to get us approved by our session on Sunday. If not, we'll call out the big guns (our fab pediatrician will write all sorts of letters and make every effort to use his diagnostic tool bag to get us services). But we are hoping that Independence Blue Cross doesn't make us get ornery (or cross) with them. It ain't pretty when the mamas get their feathers all ruffled.

In other related news: the eating is getting a bit better. Hallie has thrived on her diet of Veggie Stix (those meltable snack food items and NOT carrot and celery sticks in the raw) and has mastered the art of making it through about 20 of these at a dinner time seating, meaning that we get to sort of eat as a family these days. And even more impressively, she ate 5 whole Scooby Snacks graham cracker sticks tonight at dinner. This is a whole 60 calories, folks, and replaced an entire jar of baby food puree. And even her purees are getting a bit more sophisticated (she ate two jars of Stage 3 this week). So maybe we're seeing some oral progress across the board. Who knows, perhaps we will free up that big shelf filled with tiny jars some day? I'm not going to run away with my fantasy of having more space in our cupboard just yet, but I am pleased that Hallie does seem to be making a bit of progress in terms of texture and that this progress has gone on long enough for it to seem real as opposed to totally fleeting.

And, finally, sort of in terms of progress, I do have two more vomit free days to log in to our tally, one in the month of March and one in the month of April. Hallie did well on Saturday AND Sunday (making it another one of those two-in-a-row sort of victories), but Monday ended up being a wash out (huge post dinner vomit) for reasons utterly unknown. Today was a good one, however, and so we got to start off the month of April on the right foot (or mouth...). The kiddo is still not pooping up to our standards (or her GI tract's standards, at least) and so this continues to be of concern. We have her on Reglan, Miralax, Pear nectar, and taking a pretty large dose of flax seed oil. We are also giving her Calcium/Magnesium and the fish oils. All of that should promote easy pooping. Yet not in our girl (who will be embarrassed to read this some day. Sorry, baby!)

We're hoping that our eagerly-awaited upcoming visit to the Allergist (what the hell kind of parent can't wait until an Allergist pricks their kid's skin?) will shed some light on what's going on here. And it might provide some insight into the small patch of dry skin/eczema that Hallie has on her thighs and, more intermittently, on her eyelid. It's hard to know what's setting this off, but we'd like to get some insight into this so that we can nip this problem in the bud. There's a strong family history of allergies, asthma, and eczema (and all three seem to go hand in hand and are to some extent related to diet), so I am not sure we can place the blame here on microprematurity. But whatever is going on, we mamas really want to get at the root of things so that we can fine tune our very fine toddler.

Allergist Update

This is going to be brief because it's way late and I need to go to sleep so I can be up in five hours.

Ami (Hallie's fab nanny) and I took Hallie to her allergist consult this afternoon. Our girl was a bit of a mess since she's been eating very poorly (basically we're back to pretty chronic post meal vomiting again, particularly if she's had more than 2 ounces of Stage 2s or more at any one sitting). She's not vomiting with her bottles (I will probably regret typing this later on today!), just with food. And this has nothing to do with choking on real solids, purees, or anything of that nature. This has been going on for three days now. It's probably related to her chronic constipation, which seems to have gotten considerably worse in the past couple of days. This could be related to the introduction of some real solids in her diet, but whatever it is, it has not been responding to the reglan or the Miralax. It finally responded to the Milk of Magnesia I gave her in the car today and by this evening the problem had (temporarily) gotten better, but the vomiting post meals, sadly, had not.

Anyway, on top of this, Hallie had refused to nap altogether this morning. She even refused to fall asleep in the car, which is uncharacteristic of Hallie, especially if she hasn't napped in a while. None of us are sure what's up with her.

We got to CHOP without incident and Hallie actually perked up a bit when she realized that we were going to let her wander around the waiting room. We put on her socks and shoes, unstrapped her from the stroller and off she went. She had a blast (and her first big poop blow out). She was psyched.

All things considered, we got in to see the doc pretty quickly. Hallie's weight (taken post poop, but with a dry diaper on) was 23 lbs. 11 ounces, so even if we subtract for her diaper, she seems to be holding her own on this count. That's a bit of a relief given how the eating is going.

The allergist was great: we avoided the awful pricking of scratch tests since they do little to confirm or deny a cow's milk allergy (which is apparently really hard to diagnose) and instead ended up devising an assessment plan based on diet. We'll try her on goat milk only for a week or so, eliminating all cow dairy from her diet. If this helps, we'll just stick with it. If it doesn't, we'll try soy. And if that does not help after a week or so, we'll try the super-duper-bring-us-to-the-brink-of-bankruptcy-especially-since-insurance-doesn't-cover-it elemental toddler formulas (either Neocate, Jr or Elecare). We have samples of both, thankfully (but sadly just enough for a few days worth of trials). If she hates it and refuses to eat (remember, on top of everything, Hallie is finicky about her formula and always has been), we'll back off since our doctor sanely considers that aggressive treatment (e.g., an NG tube to force her to take the elemental formulas) is NOT the way to go in Hallie's case. As the excellent doctor put it, Hallie has been through so much aggressive treatment already and that this simply does not seem to be worth it. The costs of an NG tube (given Hallie's issues with food aversions, extra-sensitive gag reflex, etc) are just too great and would probably result in a setback that is greater than any benefit we'd gain from it.

The other thing we'll try, if the goat milk alone doesn't do the trick, is backing off of the calories a bit. I do this with some trepidation given her eating patterns generally, but I do know that 27-30 calories/ounce in its own right can be hard for her system to handle and that this could indeed be contributing to the constipation issue.

Anyway, this gives us a plan for the next few weeks, and hopefully something will help our poor tummy-ache ridden little girl. We've got to get her little system moving again and we need to get through this latest bump in the road. She is otherwise doing so well (her babbling is picking up more now that she's worked on her walking to the point that she can walk with toys, practically run across the living room even when it's debris-strewn, and happily stoops and picks things up without sitting down). And she's in the process of perfecting her climbing, too: she's gotten up and down off of the couch several times today and on Monday climbed onto the table next to the couch so that she could look out (and slobber on) the living room window. Sort of frightening, but a milestone nonetheless). If only we could get her GI tract in order I suspect we'll be a much happier trio. Meanwhile, we're all emotionally fragile, but through it all, I need to and do keep reminding myself how far she's come in the past year and a half and how well she's doing. Sometimes I feel like I'm being greedy, wanting to get all this worked out too, and that I should just count my blessings and be satisfied. But then I see how much her tummy hurts her, and I can't allow myself to settle for that. It's not really a matter of us hating the vomiting and all of the cleanup it entails. Nor is it our emotional and psychological health that's the real issue (though this, we do need to remind ourselves, does count for something and is important to our family as a whole). It's our girl that is the important one here, and if our girl isn't happy, nobody's happy.

And with that, I MUST get to bed. Hopefully things will pick up and head in the right direction in the morning. I've got my kid's prune juice miralax cocktail chilling in the fridge (ICK...prune juice always reminds me of a section in Goodbye Columbus by Philip Roth that I'd rather forget; plus, it has a bit too much of a ring of a Jewish grandfather's breakfast---specifically my zaydeh's breakfast----for my comfort) and I'm ready to turn in!