Amazed and Surprised: Feeding Psychology and Who is Really in Control

Sometimes Hallie does stuff that we find confounding, in a good way. It then becomes clear to us how on the ball she really is, how much she follows even when it's not clear that she's listening, and how smart she is. Here's what happened:

Yesterday, we trekked over to CHOP for our first real session with the psychologist who is part of the Feeding Team. We're always a bit conflicted about the feeding stuff since we never really seem to get very far before we hit another roadblock but we were heartened that the psychologist listened to us when we met with her a couple of weeks ago to go over Hallie's case and figure out some sort of strategy. Our aim was to take it slow (always a good thing in our book since shock tactics backfire terribly around here); use a behavioral approach but one that did not involve force feeding, which is something with which neither of us are comfortable; and, most importantly, create a ritual around eating for Hallie that she could assimilate and then work from there to advance family mealtimes. Rituals really work for Hallie--she likes routines a lot and, while she's never prone to tantrums when routines are disrupted, we do know that whenever we switch things up on her, she tends to withdraw more into herself because she gets overloaded. We absolutely hate it when Hallie shuts down for all of the pretty obvious reasons.

Anyway, the plan was to begin with a snack at the table that did not involve television. We've used TV as a mealtime distraction/reward for pretty much as long as Hallie has been "eating" solids. We find it disruptive and, in the end, counterproductive. Ultimately, we'd like to get away from using it this way even if Hallie does a pretty good job, for her, of eating OK meals while wandering around watching the Wonder Pets and Yo Gabba Gabba. We don't envision living a life where everyone eats meals in front of the TV and TV-watching, while pretty interactive in our world, tends to be anti-social and the last thing we want to do is to stoke Hallie's already proclivity toward preferring electronic friends to real life interaction. Still, the psychologist understood why we can't afford to go 'cold turkey' and change everything up at once. The last time we did this with feeding, when we insisted that Hallie eat at the table and gave her the power to decide how much and whether she ate, Hallie responded by going on a full-fledged eating strike. She's eating pretty well right now and we don't really want to disrupt that entirely.

So we got to the doctor's office, after learning that Hallie grew another quarter inch in the last two weeks but lost about 4 ounces---we're not too concerned with this because she was, after all, pretty sick for about a week and her weight, 31 lbs. 11.5 ounces, and especially her height, which is 39.75 inches, are quite good. I pulled out the preferred snack--a small slice of chocolate cake--and the psychologist plated it up. She told Hallie what was happening: that she was going to sit and take a bite and then get to play with a toy. That if she did not take a bite herself, that V. would help her. And then she'd get to play. And that if she didn't take a bite at all, she would not get to play." Hallie, who is in a hungry phase right now (she seems to compensate for illness-related weight loss by experiencing a burst of hunger that helps her make up those calories she's lost), grabbed the fork and fed herself a bite of cake. Then she played for 30 seconds. And then repeated this process, quite happily and without a shred of protest, another nine times. That was it. The process was over in about fifteen minutes and then the psychologist and I went over the "rules" and how the goals of the process was a. to reinforce that we are in charge; b. get her comfortable with the ritual and craving it (or at least the playing between bites even if not the cake itself); and c. to ultimately generalize from this to bigger things, like getting Hallie to eat non-preferred foods, or more foods, or meals, or whatever we decide we want to do.

One critical feature is that, during this process, whoever is feeding Hallie needs to be able to devote complete attention to her and to the process so that it is basically the same all the time. This is awfully hard to do when one parent is watching both kids, but the reality is that Sharon gets home a bit too late for the snack to be successful once there are two parents in the room. Sharon and I talked over this whole issue on the phone this afternoon and we decided that, around 6:30, immediately upon Sharon's arrival home and after Hallie had already eaten something for dinner, we'd do the cake snack ritual thing.

Well, apparently, Hallie wasn't going to let us take complete charge of the situation. Around 6 o'clock or so, she went up to her high chair at the table and said to me, "Chocolate cake please mama!" Fortunately, Lea was in her swing (during an abortive attempt at a nap) and I was able to drop what I was doing and slice off a piece of cake for Hallie. I recited the rules to Hallie, who was eyeing the cake the entire time and who gobbled up that first piece very fast. Then she played for 30 seconds, handed the toy back to me, ate the next bite of cake, and repeated the process for seven bites. It took a bit -- but just a bit -- of prodding to get her to eat bites eight and nine, but she returned to her eager eater self for bite number ten when I told her that she was "taking the last bite." And that was it. Ten minutes or less from start to finish.

I have no idea how it will go tomorrow or the next day or whenever Hallie returns to her non-eating self.

But what was clear to us is how much she understood of the process and what the expectations we had for her were. It's also clear to us that we need to give her more credit (and be careful what we say around her) because she really does take everything in. And it was also clear to us that, even though this is supposed to be our ritual, our super smart three year old is really the one who is in charge. This doesn't surprise me in the least. And Hallie being in charge is part of the solution, yet also part of the problem.

***

For those still counting, we are up to 253 vomit free days and hope to make it to the 270s this year. Thanksgiving complicated matters: Hallie went to bed with the beginnings of laryngitis on Thanksgiving eve and woke up with a fever on the big day itself. She was very sick all day, which led to two bouts of vomiting and lots of lying on the couch lethargically all day on Thursday and Friday. By Saturday afternoon she was on the mend and, other than a residual cough, she's fine now. I had the same thing, without the vomiting, earlier in the week so I felt a particular sense of empathy for Hallie. This was a short lived but miserable little cold and I know that I wanted to consume nothing but tea and soup all week. Given all of this, we stayed home on Thanksgiving (we are thankful for Whole Foods which was open until 1pm and provided Sharon and me with turkey and all the trimmings at the last minute). Sadly, we missed out on fun times with cousins, but it's better to have spared them this malady and clearly Hallie wasn't really up to playing anyway. Ultimately, we are thankful that Hallie weathers these little colds so well. It will never cease to surprise us, or her doctors, that Hallie's lungs are as strong as they are.

OK--off to bed. Gotta get up early so that we can go find some shoes for the girls (Lea needs to graduate from Robeez to something that doesn't leave indentations in her little fat feet) in preparation for the holiday card pictures we plan on taking tomorrow.

Eating at the Table

 

Still working on my mammoth preschool post, and several others. But meanwhile, we have some breaking news: Hallie is no longer eating in front of the television but at the table, with her family. We started this trend this past weekend, when we were down at Aunt Laura's and Uncle Bryan's house to visit with the cousins and rest of the family and take Hallie to her hippotherapy evaluation. We decided that, enough was enough: the TV is a major distraction; takes away from joint attention with real, live people; protracts mealtime in a deleterious manner; and is downright annoying. Plus, it really wasn't helping any more--she ate no better in front of the television than she might otherwise have done (which is to say, she eats poorly in both cases). So we fed her with her cousins at the table for most of the weekend. At least this way she'll have family meals.

I have to say that, so far, so good. Meals are shorter (around 45 minutes), more enjoyable (most of the time), and more normal. Plus, we get to eat (even if it's just a bit of the same stuff that we're feeding Hallie). We've moved the high chair to the table (we still need to use this or else we end up with meals that consist of four or five bites) and set up our second high chair for Lea (who is eating rice cereal with us at dinner).

We do end up reading with Hallie or coloring, but at least these are joint activities. Hallie can't really have a conversation with us that is substantive; we've tried asking her about her day, but her capacity to discuss things that she might have done out of context is limited, to say the least, and all parties end up feeling frustrated. We try hard around here not to make mealtime (or speaking, for that matter) more frustrating than it already is for Hallie.

So far, save some behavioral stuff at the tail end of meals when Hallie really has had enough of sitting there (even if she hasn't eaten as much as a typical kid might at a meal), we've had no major meltdowns. I've started having Hallie take responsibility for cleaning up her food. She won't use a plate, but she will replace all of the leftover food on her tray into the appropriate plates or dishes and help wipe herself and her tray down. And if she does pitch a bit of a fit, she needs to tell me that she is sorry. The rule is: we'll try to respect her (within reason, so, no a two bite meal is not good enough) and she'll try to respect us. At least we've got the rudimentary building blocks of etiquette even if she can't really handle spoons too well and likes to use her fruit purees (of which she is eating less and less these days) as a sensory tool (think fingerpaints).

And, as of today, we've hit 140 days without vomit, which is just a little bit shy of the number of days without vomit that we experienced in all of 2008.

We're hoping that the feeding therapists at Thomas Jefferson University, where we just completed yet another feeding evaluation, can help us in this process. They take the absolute opposite approach that CHOP does, which is to say that they are not using a behavioral approach (which often is tantamount to force feeding in our estimation) but a more child-directed approach, to improve mealtimes. We'll find out some time next week when they can work us in for weekly sessions.

It's sort of funny and sort of sad that it's so hard to find time in Hallie's schedule these days. She's the quintessential over-scheduled child, but rather than partake in T-ball and soccer and dance and gym classes, she goes to occupational therapy, hippotherapy, feeding therapy, and DIR/Floortime therapy, on top of her 17.5 hours per week of preschool, 3.5 of which are devoted to OT, speech, special instruction, and theoretically PT (but not actually, since there is no physical therapist who can visit her yet and the folks that run the 3-5 program are gleefully violating Hallie's IEP...presumably they will be doing so a bit less gleefully when I get back in touch with the nice lawyers at the Education Law Center with whom I have been having some interesting conversations of late...). Anyway, we were considering adding in private speech therapy and a social skills class on top of this, but, frankly, there's nowhere to add these. Besides, as Steve, Hallie's Floortime therapist, asserted the other day when I was discussing this with him at the beginning of Hallie's session, it's not clear that Hallie is ready for social skills classes yet--she needs to be able to fluidly complete 50-60 'circles' of communication (not just speech but gestural, body language, etc) in order to get the most out of a social skills group. Hallie can currently complete 20-30 on a good day, but this is still a lot of work for her and, so, what we need to do right now is focus on getting her to another, higher developmental stage.

Which brings us to issues related to preschool, and that needs to be in another post because it's already plenty late around here and I need to get some sleep before I begin my own over-scheduled day in a few short hours.

Our Girls are Holding Their Own

 

Here are some cute shots that Sharon took of Lea this week. As you can tell, the little one is developing quite a personality.








Our little Lea is becoming such a big girl right before our eyes. It's amazing how much more aware and interested she's become in the world around her over the past few weeks. And it's equally amazing how much new stuff she's doing, too.

Lately, she's been holding her own bottle on a fairly frequent basis:

 

And she's developed a very earnest interest in all of her toys.  She bats at them, swats at them, grabs them with her hands and feet, uses them to help her roll over, and has begun to mouth some of them.

 

She has also discovered that her fingers taste awfully delicious. No doubt this is related to teething (which has also wreaked havoc with her power naps).

But perhaps the most exciting development (at least for us) is that Lea has begun to eat rice cereal and LOVES it. This is not unexpected, given how well Lea has taken to the bottle, but it is a great relief for us to have a baby in the house who is excited about getting into her high chair at the table and actually leans into and opens her mouth for the next bite.

 

Lea also adores her new exersaucer (which she inherited from her older friend, Taylor, Aunties Renee and Kim's little girl.

Of course, it's a bit of a challenge keeping Hallie out of it; between this and her sudden desire to spend time in Lea's crib, it's pretty clear that Hallie is reminiscing about her babyhood.

 

And, speaking of holding her own, Hallie is doing a pretty good job of it right now, too. After a pretty rough week or two, wher her eating really dropped off and Hallie became scattered and less focused (so much so that I began to worry about regression at the very least and whether her developmental ped shouldn't have diagnosed her with PDD-NOS at the outset), Hallie had a pretty tremendous day yesterday. I really began to see her put things together in a new and improved way.

She's been doing some real pretend play that's exciting to watch. Here are a few recent examples: she loves playing with these Playmobil characters and has regularly paired them off and had them hug one another for a while now but yesterday she had them call one another 'friend.' She also gave her toy banjo to the Count (from Sesame Street) and had him play it, and then trade it in for a drum and drumsticks. Later on, she began to fly her airplane around the room and stated, "I fly airplane!". This morphed into her pretending to be a bird (flying and saying "tweet, tweet") and then riding a bicycle and driving a toy car around the room (which she narrated with "I drive my race car!"). Hallie also made something to eat for us in her play kitchen and fed Lea (whom she has watched eat, so she knows it's now time to feed her and not just try to put a bottle or binky back into her mouth) and me some of her food; declared a tea party during her dinner time and provided both Sharon and me with cups from which to drink (into which she poured out some tea from her teapot) and insisted on shaking Lea's hand (telling her "we shaking hands!"). Add this to other stuff she's been doing (pretending to be the Count by putting Sharon's jacket over her head and saying "I be the Count! One, two, three....Ah...Ah...Ah!") and lots of singing (she knows all the words to "Wheels on the Bus", "Itsy Bitsy Spider", "Kookabura", and the theme songs to Barney, Caillou, and Sesame Street and, for a kid with a paralyzed vocal cord, has a pretty good, if soft, voice) and I think it's safe to say that we are having a developmental explosion around here. She had a great time showing off her knowledge of every kids' song when her new Special Instructor, Anne, came to visit the house yesterday.

That isn't to say that there won't be regressions (Sharon tried to remind me of this last week during my lowest moments and, naturally, I was resistant to listening, but of course she is right on target, as usual). Nor does this mean that Hallie will stop throwing her toys (she still likes to dump; now she likes to announce it, though by saying "I dump toys!" with a certain note of glee in her voice). But it is nice to know what's going on in Hallie's head (easier now that she is beginning to tell us this stuff) and that what we're seeing has structure, organization, and meaning for her. Of course, I would have preferred it had Hallie not decided to wake up in the middle of the night again last night (Sharon took the 3:15 to 5:15am shift and I've been up ever since then. Hallie drank a bottle, ate breakfast, and was asleep by 8am. I am still awake. Sigh).

Anyway, on that note, time to start my day. Double sigh. And triple yawn.

Here's a few recent shots of our big three year old.



In this picture, Hallie's showing Sharon the letter Q and saying: "Q is for Quack"

And in this picture, Hallie's donned all of her eating safety gear for a snack with us at the table:

 

It's great that she's been asking to join us at mealtimes in the big chair at the table (which is the one we use for Lea; I strongly suspect that Lea's use of the chair, which was Hallie's first feeding chair, has suddenly made the object attractive to her). But mealtimes remain a pretty stressful thing around these here parts and we seem to be back to the horrific eating patterns again, after a brief break of last week when she ate pretty well and quite happily. Even periactin isn't helping too much right now. It's all behavioral. We've decided for now to just time the meals at 45 minutes and if that time elapses and Hallie's still not done, we're taking away the food. Hopefully hunger will get the best of her. And we do have an appointment with the CHOP feeding team tomorrow. While we've got some reservations given their reputation as adherents of the Kennedy-Krieger approach, we've heard that the psychologist has helped other families in situations like ours and we are hoping that she can give us some advice on how to change our incredibly bad feeding dynamic so that our lives can regain some sense of normalcy (whatever the heck that amounts to) around here.

To end on a happy note, we are now up to 115 vomit-free days this year.

On Eating and Its Consequences

That does sound a bit like an 18th-century tome, doesn't it, except that the 18th-century tract's title would have been followed by a colon and the following:

"a discourse concerning the first-hand exploration of the evidence of digestion, or lack thereof, and the malfortunate outcomes for the teeth of a young girl, witnessed at first hand by an explorer through the world of Hallie, recently yet tentatively among those who chews her food and will perhaps thereby avoid the moral and other consequences of sleeping with her bottle."

Yeah, that about sums it up. Gotta love those early modern titles: while long-winded they capture the essence of the thing and let the reader know precisely what's in those moldy binders before he or she mistakenly grabs the book off the shelf thinking, perhaps, that it's some excellent mystery.

Except for, of course, it is: no one really knows where this consequences-of-prematurity thing ends.

OK--where to start, now that you know the subject?

Well, I guess I'll begin with the family meeting/conference call that happened at the ped's office on Wednesday. It really wasn't quite the whole team. It was me, Sharon, and Ami (Hallie's intrepid nanny who is as invested in this as we are), our ped (who is great---and I'm not just saying this because he knows we blog), and our GI fellow, who called into the ped's office. Not able to make it was Allergy (which was too bad) and we didn't invite pulmo (though we may be seeing some exercise-induced asthma issues with Hal, but I'll raise that at our appointment in two weeks) and eyes and ENT were not really relevant. I would have liked Allergy's opinion about a repeat scope, but we'll have to get that later on. Right now, our chief goal is to rule out some other stuff so that we can figure out to what Hallie is really allergic and what just makes her tummy uncomfortable for other reasons.

The good news from that meeting is that we can take serious weight loss off the table. Hallie weighed in at 29 lbs (1320 grams), which is only a half ounce gain since early-mid September, but, given that she's been sick and, given that this still puts her at above 50% on the weight curve for her actual age, we're less concerned that we were a week ago about this. She has also gotten a bunch taller---we did not measure her length (she gets that done at GI next week), but we know from the way her pants are fitting (as in, she doesn't drag three inches on the floor) that she's getting pretty tall. This makes her seem skinnier.

So, with major nutritional concerns off the table for now, we can talk about the really serious stuff. In my mind, the biggest question is why her motility is so delayed and what we can do about this. It is typical for a person to void about 90% of their stomach's content in an hour, and we know from the last motility scan that Hallie had about an 80% residual at an hour (for informational purposes, this is formally called a milk scan---where they strap you down on a table after you drink some barium-laced formula and then they chart how quickly your tummy empties; the scan also picks up big reflux events, but the gold standard for reflux is a pH probe, which we've never had done and do not ever want to have done). We know from empirical evidence (undigested food coming up three or even four hours later) that Hallie's motility is still impaired. Sadly, a bag or two of time stamped vomit will not suffice for the GI as 'evidence', so we will have to try to do another scan to confirm this. This shall not be any fun, given that Hallie doesn't easily get strapped to anything these days (more on this later) and we need to find a radiologist willing to experiment with the as-yet unpatented 'seated milk scan.' We can definitely keep Hallie in a chair for an hour and distract her properly, but lying back on a cold steel table is something that elicits memories of a. RSV shots b. ng tubes and upper GIs and c. quite possibly some NICU trauma in our girl. We firmly believe that toddlers have memories (and Hallie's seems prodigious--she remembers people and associations; she knows about twenty books and more episodes of Sesame Street---can even remember what letter of the day goes with what episodes---and Signing Time by heart and we are not looking to traumatize our kiddo further. More on this later, too). Anyway, so we'll try to do the scan and see if it works, and if it doesn't, we are not going to push it.

One reason we are doing this is to see if Hallie will qualify for an FDA waiver to use cisapride, a very good motility drug that has very bad cardiac consequences for a small subset of people who have Long QT syndrome (a cardiac arrhythmia). She would have to do a cardiac workup (EKGs etc) but it could very well be worth it if this drugs helps empty her stomach more quickly. She is very severely volume limited and very gassy and we believe very uncomfortable and has developed some negative associations with food because of this.

We will also treat her empirically for bacterial overgrowth in case that is part of the problem. This involves flagyl, a heavy duty antibiotic, and we're a bit concerned that Hallie will not take to it well (she has a history of not tolerating antibiotics) but we'll try.

And we're still trying to get someone to answer whether we can safely add digestive enzymes to her food just to see whether that makes a difference. I need to rephrase this into a simple 'yes or no' question and try to get the GI to come out for or against them next time I see them (on the 19th).

If we rule out motility, or figure out how better to treat it, we may be able to isolate what sets Hallie off food-wise more effectively. I suspect she'll be okay on fruits and that more protein rich foods will still be more of a problem, but at least we'll have more variety in her diet.

Speaking of diet, the other thing we talked about with the ped and GI was how to get Hallie to eat more willingly. Here I need to explain: Hallie VERY willingly eats 'safe' purees until she is full (often gets less in than she needs to gain, but not to maintain her weight). The problem is that she has never made the leap to self-feeding or dealing well with texture. We know that she can chew---she does this with her sticks and fries---but it is a lot of work and she tires quickly. We think this is because she has poor muscle tone in her mouth (no doubt about this one; this has also impacted speech production and as her speech gets stronger, so does her chewing, and vice versa). We also think her swallow is a bit off--she gulps with every bite to clear her mouth and it cannot be fun to do that. We are not sure if the gulping is related to some sort of inflammation but we know that it's not structural and that her paralyzed vocal cord is not the culprit (though it probably doesn't help things much).

The not self-feeding and not eating textured foods is one of the big things that keeps her from being a 'typical' toddler. She is eating at the stage of a 9-10 month old, not a 30 month old. And she requires a lot of help from us and eating becomes a full time job both for whoever feeds her and for Hallie herself. Toddlers don't like to sit still, so this reinforces the negative associations that Hallie has with food and fuels her eating aversions. Not to mention that it makes it hard for us to ever leave the house.

Our GI rather unhelpfully suggested to us (YET AGAIN) that we tube Hallie. Uh, no, we don't think so. Number one: who the heck tubes a kid who is at the 50th percentile for weight and demonstrates that she can gain well? Number two: tubes are massively contraindicated for DGE, and we are not doing a GJ tube. Number three: she is not delayed on most of her milestones, is making fabulous speech gains right now (she has numerous two to four word phrases at this point and hundreds of individual words and signs). So, no, not unless you can convince us that there is some reason other than convenience to do this. This is major surgery and most likely will gain us very little and lose us much in the process.

We explained all this to the doctors, though I still don't think they completely comprehended that Hallie is not classically averse to food---as long as she likes it, or she knows it's not making her sick, she willingly tries food (once she begins to realize that she doesn't feel well on a particular food, she will reject it. We see this as self-preservation and not as a feeding aversion). She will play with her food, as a couple of the pictures below amply demonstrate). And her vomiting is less frequently at meal time than after a meal---when she is stuffed and feeling nauseous. So some of the classic approaches to feeding therapy won't work for Hal. The question is: what will?

Our ped wants us to play around with letting her feed herself and control things more. We've been doing that for the past couple of days, and, while Hallie's made great advances in terms of texture, this process means that she is eating very little food (and we're having trouble letting go of calorie counting) and the process itself is very messy.

First, the texture advances: Hallie actually ate about a third of a whole pear yesterday. I cut some slices up for her into 'stick' shapes (and peeled them) and she ate four or five quite happily and then signed and called out for "more." We were thrilled and surprised since, other than requesting potato sticks or french fries, Hallie has never actually asked for more of anything (other than her bottle, which is mostly for comfort). So I cut up some more and she ate most of those too. She ate more at lunch. And then at dinner she ate about 15 fries (50 calories, plus some more for oil).

Hallie also expressed a lot of interest in feeding herself purees, but can't quite manage a spoon terribly effectively yet. She begins by dipping her spoon into the puree (either prunes--homemade--or jarred baby food pears and apples) and then gets frustrated and figures out that it is easier to eat this (and her cheese/yogurt mix) by hand. She thinks it's a blast, but she gets a whole lot more on herself than in herself.

Here are two of our favorite shots from the 'be your food' series:



Note to self: prunes does not make a very effective hair gel.

So, we're going to continue to let Hallie control things more and play around with solid textures and do a weight check in about ten days to see what she's lost. We are hoping that more eating of solids will yield more capacity to eat solids quickly (a big issue for Hallie is how slow it goes; she hates to be in the high chair for too long and who can blame her?). If we can get her to add more solid goat cheese (goat mozzarella) to her diet, we'll be able to get her caloric intake a bit higher too. Ditto with french fries. Our goal is a whole serving (which is still only 110 calories, plus oil).

It's taking a huge amount of self-control on our part not to run and feed her a jar or ten of food to make up for things, but as long as she's not dehydrated or losing weight too quickly, we've got to keep trying. And if, in the end, we can't do this ourselves, we will need some intensive feeding support (but it has to be the right kind, which is not going to be easy to find).

Speaking of professionals that one doesn't trust, behold the pediatric dentist. With some trepidation and foreboding, we took Hallie to the dentist for the first time yesterday (about a year late, even if we account for her prematurity). The guy we saw is reputed by a lot of parents to be the best pediatric dentist in town, but we beg to differ. First, the waiting room at 8am on a Saturday was chock full of people. We were a bit surprised to see so many parents (fewer kids, because the places discourages parents from coming back into the treatment area) at such an early hour. We waited our turn and finally went back to the dental zone. The dental hygienist was nice enough, but Hallie wasn't thrilled (she has lots of issues around people touching her mouth. Gee, with repeated intubations over the first 9.5 weeks of her life, a lot of scopes and OG tubes, do you think she's got a reason for this?

You will note in the photo below that only one of us is smiling:



The dentist then came into the room and had a look-see. He spent about five minutes with Hallie (and we suspect even less with her medical form, which was filled out by me, and required much more than the standard one line or two provided for details). He noted severe decay, including nerve involvement, on the molars (one required capping) and pretty extensive enamel decay on a few other teeth (I'm not sure how many because he was really not specific. There were kids in six or seven dental stations, one dentist, a few hygienists, and no real time to spend per anyone child. Truth is, it felt like a factory with a couple of toddler- and child-friendly murals and games in the waiting room). His verdict: give her a whiff of nitrous oxide, strap her to a 'papoose board' (he did not appreciate my analogy of said device to a strait jacket), cap one tooth, bond a few others, send her home. When we expressed concern about the emotional trauma, and how this might adversely impact her already fragile mouth-related stuff, he said 'she's young; she won't remember it.' (Reminds me of all those idiots who treated premature neonates without any pain killers because they thought neonates don't experience pain. Not true at all). As I said, Hallie remembers everything and is a very bright little girl. So we asked about alternatives. His reply: dental surgery with intubation and general anesthesia. Now we might go this route, but not with him, and we need to explore the middle of this spectrum: what about versed? what about other forms of 'twilight sleep'-ish drugs (like the ones Sharon got for the IVF and FET transfers; she really has no memory of these events at all). His answer: no go.

Our answer: no go to him.

So, if you are reading this and are in the Philly area and have a recommendation for a GENTLE pediatric dentist, please email me at abbyschrad at earthlink DOT net. We will be talking/calling around to other dentists, and particularly those who specialize in special needs kids and doing it pronto. We want to help Hallie and making her mouth stop hurting so much will probably go far in this direction (getting her to brush also will, we hope...Amy can do this, we cannot. Amy must train Hallie to brush for us. Not sure how this will go down).

Anyway, that was all a little disappointing. It's only after the fact that we figure out what kinds of questions we need to ask before we schedule appointments with new types of specialists. But better to do this, even if we have to pay out of pocket for second consults, than to traumatize our kiddo. This experience also just reinforces the sense that we have that we cannot ask the parents of typical kids for recommendations; they simply don't know our situation. It's not that we are pickier than your average parent (well, okay, we are pretty picky) but also that we are dealing with a special set of circumstances. And that's okay--we need to meet and treat Hallie where she is. And in the process, we really do find some of the best professionals out there, so it's not all bad, right?

The other thing that this all confirms for us is that mommy instinct rules. (in the interest of gender and relational equity: daddy and caregiver instinct rules, too!)

What else, before I draw this huge tome that resembles the 18th-century tract in terms of length as well as title, to a close? Speech gains: amazing. Hallie has an avid interest in counting everything but her favorite thing to count is her toes. She likes to pull off her socks at diaper changes and count them and count them after her bath and before bed at night. Lately, she has not only been saying "one-two-three-four-FIVE!" but following this up with "FIVE TOES!" She has also been approaching Sharon with the following phrase "read book mommy please!". I think this counts as a real sentence! Woo hoo! She has been asking for increasingly sophisticated things by their name, resorting to her "I want some that, PLEASE!" only when she cannot name it. Not everything is clear, and sometimes we have to guess (figuring out that she was saying "Signing Time!" and not "Rachel" for her favorite show took a bit of work but I managed to do it---especially with the help of her addition of a fairly good approximate of the title in ASL). But words and phrases are coming in fast and strong and we are thrilled.

The other milestone reached this week is that Hallie has figured out how to put on her own socks. She is thrilled by this. So she can handle socks and shoes at this point; she is working on shirts and pants but tends to mix the two up a bit. She'll get there. She always does.

And speaking of getting there: her cold is clearing (still coughing some, still a bit congested, still on Albuterol) and the vomiting has abated a lot. So we've clocked in 160 days without vomit in this house this year, so far. Never mind that caloric intake is down (the two do go hand in hand, alas!)

And finally, as if that is not enough, Sharon hit 31 weeks yesterday (and her 38th birthday today). The ped, who had forgotten that Sharon is pregnant and that he is the one who referred us to our OB, just thought she had put on some weight...but of course said nothing because he has a wife and three daughters and they have trained him well. It's kind of nice to know that Sharon does not at all resemble a full-term pregnant lady, which is what she looked like at 22 weeks with the twins. So our fingers are still crossed, but things are looking more and more like she will go to term or close to term. And we are grateful for this.

OK--if you survived this update, you are a courageous reader indeed. I will try to be more timely next time!

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.

Question: Vocal Cord Paralysis and Eating

I know that there are a bunch of you moms out there with experience in this field, so this one is for you:

Yesterday, Sharon was eating a piece of reheated pizza and Hallie expressed a lot of interest in it, and so we thought: what the heck, she's not had anything to eat in a while, why don't we let her experiment with taking a bite and see what happens (and of course we prayed we didn't have to dust off those rusty CPR skills). It went great--it was clear that she knew how to bite (all that practice with book eating really seems to have paid off), and she knew how to chew--definitely up and down and perhaps some rudimentary rotary chewing. She still is lacking her first year molars, but she looked good chewing. And she even figured out how to swallow without panicking (we've always assumed the vomiting up of solids was a fight-or-flight thing kicking in).

That went well and we thought: maybe the issue is that Hallie can't deal with thick purees' texture but is okay on crunchy stuff (there is evidence that this is true of other kids). So we decided to see what she would do with the first real hard food kids often get: biter biscuits (or teething biscuits). We have a full stash of all possible foods you might feed kids who are transitioning to solids (of course we do: whenever she fails to eat I buy new products that she ends up not eating in the hopes that she might be able to eat them). And so I ran to the kitchen and got one and we put her in her high chair in front of a Sesame DVD and let her have at the biter biscuit.


She did great. It took awhile, but she bit off pieces, chewed them, pulled out pieces that were too big, put them back in (sorry about that graphic image) and ended up swallowing them. There was a tiny amount of choking, sputtering, spitting, but nothing disturbing.

Now we were really puffed up, so I decided to pick up some Cheese Puffs (sorry about that bad pun) at Whole Foods (they are NOT as tasty as Cheetos, by the way). We were going to our neighbor's Josh and Nancie's for dinner and thought that it might be nice to use these as a bribe for Hallie to stay in her high chair and let us eat dinner together like real people do.



This worked for a while. She bit, crunched, munched and swallowed. We were thrilled. Our kid was eating something normal. Our kid was eating the same thing that another kid at the table (Ethan) was eating. Wow.

But then the choking started. And with it, the spitting. Which turned into vomiting. And morphed into projectile vomiting.

And so my question for you guys out there is this: is she doing this because food is going down the wrong way because her vocal cord is paralyzed ALMOST but not quite at midline? Is it going to be possible to do something about this if that is the case? Will that something involve a. surgery, b. botox, c. training her once she is old enough to follow our guidance how to handle solid food when choking happens, or d. something else I haven't thought of doing? And what do we do in the meantime? Do we go back to the nasty purees like the feeding clinic wants to do, just feed her Stage 2s because they are safe and we can get them in with minimal distress and they help her get nutrients and calories, or keep trying with the crunchy stuff? We're at a loss here, and kindof sad to have moved so quickly again from elation to dejection in less time than it would take you to chew and swallow ten cheese puffs...