growth

sandbox kids, originally uploaded by Kristy and Eva.

so, before diving into the topic i hinted at last time, i'll start with last week's stressor: larry went to germany for a week (on 2 days notice), and like the last time he went to europe, eva got knocked down by a GI virus within a day of his departure. this time, for added fun, i was also sick with a sinus infection and pretty nasty respiratory troubles from allergies. i'm mostly over it now so the urgency of writing all about it has waned, but she was frighteningly dehydrated. five days in, i was about 20 minutes away from taking her to children's ER on the advice of the nurse at her doctor's office (which had closed at noon on friday, oops! how old will she be before i remember that little fact?) no matter what i tried, she wouldn't drink or eat anything, a few sips here and there. she was flopped out on the couch all day, barely interacting most of the time, with dry lips and no tears. so, i gave up my fertility aims and nursed her on demand (which was at least every hour in this case) so she would get some fluids and not lose any more weight than necessary. chalk one up for extended nursing -- i'd bet my supply of rejected pedialyte that nursing is what tipped the balance kept her from needing IV fluids at the hospital.

speaking of the medical world, that brings me to the other fun stressor of the month. i took eva to her doctor a couple weeks ago because i noticed she hadn't put on any weight (or height, it turns out) since 18 mo, and he said then if she dropped any lower in percentile growth, he'd be concerned. and when i took her in, he was in fact concerned -- not so much with the fact that she was well under the 5th %ile, but more that she had been much higher (above 50th for a while) then fallen so considerably (some drop is normal for breastfed babies, but 50th to under 5th is not). that combined with her lack of change in height was especially concerning. so, he referred us to a pediatric endocrinologist. they had no openings until september, they said -- that is, until they saw her chart, then they got us in the following week. how reassuring! she's bumped right up to the front of the line.

i'll spare you all the details (again, i'm largely over it now), but we went the monday after our long duo-sick scary week with no larry for support, and we were there for nearly seven hours. we did a full history (of her and of family), had her accurately measured and remeasured (3rd %ile in weight, 8th in height, i got to read "failure to thrive" on all her lab paperwork), and i got to answer a lot of questions figuring out whether or not i was an unfit mother who wasn't properly nourishing her child. i met with a nutritionist (who seemed to think i was an idiot and didn't tell me much other than "she needs to take in more calories"... really, you think?), and had an assortment of tests -- bone age (xray to determine the level of ossification of her bones), boodwork, and urine tests. she didn't mind the xray (that was the best of the many waiting rooms we saw that day, too), and was a trooper through the bood draw, but it was the urine sample that had us there all day.

i kept trying to explain that a potty trained kid isn't going to pee her pants just because you taped a bag to her -- nor can she pee on demand like an older kid or adult. she peed after 3 hrs but also pooed, so oops, can't use that. we napped on the chairs in the waitnig room, then kept waiting while i fed her juice and water all day. she was set against the medical potty they needed us to use, and this girl can hold it for like 8 hrs when she decides to (i know from our experience in mexico!). i finally gave up so we could beat rush hour home (and get larry from the airport) and she went as soon as we got home, as i expected. moral: if you have a potty trained kid, don't wait it out, go home. you can take the sample to a sattelite lab, most likely. with a kid in diapers, you probably want to wait (according to some of my new waiting room friends, because the bag will keep falling off if you go home. but i digress...

most things came back normal. the bone age was low but within the wide normal range. however, her levels of IGF-1 came back low. low IGF-1 ("insuline-like growth factor") is basically like saying she is lacking growth hormone. (the longer answer is that the pituitary gland makes growth hormone, which has only one job, to tell the liver to make IGF-1, which in turn tells the cells to grow. the reason they don't test for growth hormone right away is that to do so requires hospitalization. but you can be low in just IGF-1 or both IGF-1 and growth hormone.) anyway, it's a bit of a chicken-egg debate with low IGF-1: either you have low IGF, which makes you not grow (and i would assume cause you to not be very hungry either if you're not growing?), or, if you don't eat well, you produce less IGF, and thus don't grow. we don't know which it is for eva, but my guess is that it's a bit of a compounding effect, and that both are partially responsible. (i base this on the fact that she's never eaten food, it's not a new toddler willpower thing, and she's not picky and is easygoing about most things, so i don't think it's just a personality thing either. it "feels" like there's a reason she doesn't eat. i get that toddlers are notoriously picky eaters, but she simply does not eat. i've seen toddlers, this is definitely unusual.)

so what's next? well, what's next is for her to be hospitalized for further tests. i presume that would include a growth hormone test (they have to stimulate it's release by giving IV drugs that trick the body into thinking it is asleep and measure it over the course of 8 hrs or more), and possibly have her fed through an IV for several days or a week to see if she grows when given sufficient calories (solving that chicken-egg thing with the IGF-food causality, i guess). none of this sounds fun, so we're waiting until after her follow-up appointment in september. we'll measure her growth then and retest her IGF-1 and decide from there how to proceed. we have the luxury of time since she's still so young, most people start this kind of testing with 4 or 5 year olds, i'm beginning to learn.

so, if she is growth hormone deficient, or IGF-1 deficient (or both), what does that mean? will she just be short? i've done some research and found out that contrary to public perception, there's more to it. basically, growth hormone controls the growth of all tissues, so it's not just your bones that don't develop as they otherwise would, your organs are affected as well (most notably, the heart and lungs, leading to cardiovascular issues and so on). so, someone with normal hormone levels who grew to 5"2" (a plausable adult height for eva) has better outcomes than a growth hormone deficient person who would otherwise have been taller but grew to that same height due to the deficiency. we have no idea if all this affects eva, and likely it doesn't, but i'm clarifying because i've been finding all of this worrisome, and i've been getting a fair amount of "well she'll just be short and cute" responses.

that, and totally conflicting advice from all corners. from medical professionals alone i've been told to: continue nursing as you are, reduce nursing to no more than twice a day, give her more calories via liquids, don't give her any calories via liquids, give her pediasure, give her instant breakfast but use the sugar free kind, feel free to give her sugar when needed, use reduced fat milk, give her whole fat milk, don't give her milk, feed her whatever she'll eat that isn't junk food (her beloved goldfish), don't feed her things that are not nutrient-dense (no goldfish), give her ice cream (since she'll eat that), don't give her ice cream, do whatever you can to convince her to eat, be laid-back and don't make an issue over what she eats.

okay, um... i'll do all that then. the best advice was from our own doctor, who said (in response to my questioning some questionable advice from various other sources) "i'd trust your own instinct and logic on that." so i am. i'm pleased to report that she ate relatively well for 3 of the past 4 days, so that has gone a long way to relieving some stress on the issue (basically, it feels like "hey, if she doesn't eat enough in the next 3 months, she'll be in the hospital" but no pressure, right?) honestly (and i hope this doesn't offend anyone), i feel like larry is the only other person who really, truly gets it. i mean, if you're not in the throws of feeding a non-eating kid, it seems like, "well, offer a variety of nutritious foods in interesting ways and eventually she'll eat". that's what i used to think, too, until she stopped growing for 6 months. and trust me, i've tried every single thing (because i've been thinking aout this every day for at least a year, so i've thought of pretty much everything a person could think of.) in fact, that's what makes this hard -- i have to think about it at every mealtime and snacktime every day. it's mentally exhausting.

this all sounds dramatic. i get that the most likely outcome is that she's totally fine, and eventually she'll grow. but that doesn't invalidate that she's in an abnormal growth pattern now, and that i have to do everything i can all day long to get her to take in more calories. that's why it took me nearly two weeks to write about this, i just get tired of thinking about it. but, i'm trying to just let it absorb back into our daily routine and we'll see. all i can do is make my best effort, eva's utimately the one who decides if she's going to eat. so we'll just march on and see what happens.