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Monday, October 10, 2005

Failure to Thrive

My son, who just turned 17 months old, is an astonishingly picky eater. I know, I know: eighty percent of all toddlers are considered by their parents to be astonishingly picky eaters (The other twenty percent, I have deduced through casual observation, are generally considered by their parents to be walking garbage disposals. There is very little appreciation for the concept of moderation among toddlers; they tend to take nearly every preference to some sort of extreme).

But my son is so astonishingly picky when it comes to eating that, despite having started off happily and healthily in the 25th percentile for weight at birth, he has, in fact, managed in recent months to starve himself entirely off of the pediatric weight chart.

When a child falls that far in his weight-gain curve, they have a name for it: Failure to Thrive.

This has lead to several weeks of visits to various expensive and elaborately titled specialists who have poked my son with myriad pointy plastic and metal instruments, taken several vials of blood from his skinny quivering arms while his father or I held him down, and, on multiple occasions, instructed me to tape plastic bags to his little private parts and force-feed him water or fruit juice until he peed.

(None of this has improved his fear of doctors, which he developed after being subjected to "minor" craniofacial surgery to remove a benign but brain-threatening tumor on his skull at the tender age of 8 months. Can you blame him? The doctors don't believe he has a fear of doctors, though. When my normally extremely friendly baby starts screaming uncontrollably at the sight of a white coat, they ask me if he's always had such "separation anxiety issues.")

After weeks of testing and investigation, the experts have, amazingly, concluded something I could have told you three months ago:

My son is skinny because he doesn't eat.

It has become something of an epic quest in our household:

GET THE BOY TO EAT.

The battle plan for achieving this lofty goal is constantly under revision. Aside from mother's milk, which he of course likes, and luckily still gets twice a day with the blessing of a GI doctor (despite our family doctor's continued odd and misinformed insistence that breastmilk after one year has no nutritional value) there are a few foods that he actually seems to consistently enjoy, in small amounts.

Dried fruit, for instance.

Dried coconut.

Apple juice.

And Breyers vanilla ice cream.

Actually, that's it. That's all he likes. Dried fruit, dried coconut, apple juice, and Breyers vanilla ice cream.

That's not to say that's all he ever eats. Well before my son was born, I vowed not to be the sort of overly indulgent parent whose children wind up living entirely off of Coca-Cola and cheese doodles. Nor am I generally person who gives up easily, especially when the health of my child is at stake. So we constantly offer him a variety of good foods in a valiant ongoing attempt to try to wake his sleeping palate.

He drinks cow's milk in small quanitites-- he'll drink more of it if you add vanilla to it. Sometimes he'll eat a chicken nugget, or a french fry, if you cut it up small enough, and use a paper towel to dab off any extra grease. Once in a while he'll go for for a piece of thin-sliced honey-flavored deli ham, if you remove the edges. If he's hungry enough, he might eat a particular kind of fried vegetable chip that can only be found in the bulk section at the Whole Foods Market one hour's drive away from home. If he's in the mood, he'll eat white-bread toast with butter if you cut the crusts off, fold the toast in half so he can't feel the butter's greasiness on his fingers when he touches it, smoosh it flat, cut it into 1-inch pieces, and eat an identical piece of toast in front of him while smiling encouragingly and saying "Mmmm." He has been known, on occasion, to sample a bite or two of a homemade pancake, if it's taken off the griddle just barely cooked and served fresh, but not hot, with the slightest hint of butter and syrup (but by no means SLIMY or GREASY).

Etcetera.

But he doesn't actually seem to enjoy any of these foods. He eyes them suspiciously. He picks at them. He frowns at them. He rolls pieces of them back and forth across his lips without actually opening his mouth. If he's really, really, hungry, he will eat a bite or three. But he quickly grows bored with such things and starts banging the tray on his high chair and moaning "Down, down, down," like a mournful church bell. The only things he is willing to eat in any quantity with a smile on his face are dried fruit, dried coconut, apple juice, and Breyers vanilla ice cream.

We've tried expanding on the known likes. For instance, we tried once for a whole week to get him to eat Ben and Jerry's premium organic vanilla ice cream instead of Breyers (It's organic, we thought. And it has lots more fat. Which is actually good when you weigh less than 20 lbs). It sure tasted good to us. But every other bite of this luscious fatty ice cream that entered his mouth was unceremoniously spat onto the floor. We've tried to get him to drink grape juice, or orange juice, or fruit punch, now and again, for variety. But after a few thoughtful sips he generally dumps it out in disgust. Coconut-flavored cakes, bread, and cookies: tried; no dice. Apple pie. Vanilla soy milk. Banana shakes. Wheat toast with apple-flavored jelly. Blueberry pancakes. Vanilla-flavored Pediasure. Fruit-flavored Pediasure.

No, no, no, no, no.

Lately, we've resorted to lying when introducing new foods (or, more often, reintroducing old ones that he's never actually given a worthy try). "Did I say that was turkey? Oops! I'm sure I meant ham. White ham!" "Dried sweet corn is EXACTLY like dried apples." "Try it! It's a . . . a new kind of french fry. Really."

However, my son, who, despite his nutritional issues, is frighteningly smart for his age, can generally tell when we're trying to pull one over on him. He has also rather precociously mastered a non-verbal way of instantly letting us know the gig is up: an artful look of withering sarcasm, of the sort more usually seen on teenagers.

So, we slog on, trying new tactics, with little progress, counting halves of ounces of weight gain. We worry, and worry, and see new doctors who tell us to worry some more, though, as all their other tests of our son's health come back normal, they can't tell us, specifically, why. "Poor progress," we hear. "Failure to thrive."

And all the while, my friendly, funny, bright-eyed, active, off-the-growth-chart-skinny son runs through life like a toy tornado, building towers and knocking them down, jumping, climbing, dancing, banging on the electric piano, practicing his alphabet with the magnets on the fridge, seeming to learn five or ten new words every day, making friends with every baby he meets at the mall, attacking his mother and father and sometimes casual acquaintances with baby bear hugs and lovely slobbery kisses.

It sure is hard to tell he isn't thriving.

20 comments:

hucpuc said...

A friend's 3 year old ONLY eats Cheerios. Nothing else. But perhaps Cheerios would provide some much-needed variety for your son?

Jaelithe said...

Thanks for the offer of helpful advice.

Alas, we offer him Cheerios several times a week, but he never eats more than 5 or 6 of them.

Months ago he used to be a little better about eating them, but I think maybe he's gotten sick of seeing them, since once we found it was one of the few really nutritious things he was sometimes somewhat willing to eat, we offered them to him all the time . . .

I really think a child could live pretty well off Cheerios, though. They have a good amount of protein and fiber for a cereal item, and are also vitamin-fortified.

ktcakes said...

I have no words of wisdom, but definate empathy.
Will he at least let you force feed him vitamins?
Are there some people he is willing to try foods for more than others? Like, my kids will eat anything if their big brother says it's good.
Maybe certain places. Like a picnic or at the zoo?

Wish you could get Breyer's to add some pediasure to their ice cream.

Good Luck!

Reba said...

I wish I could help you out with this one, but I have the exact opposite problem. My child eats everything including things I won't even eat. He even loves chicken liver. Yuck. The only thing he won't eat is cheese. He is about the 95% for weight, but the doctor says that is fine cause he is built like a linebacker. I have lots of friends with kids so I will ask around and see if I can find some help. Good Luck

Anonymous said...

I too have a failure to thrive child....at least medically. She is just as active and bright as you describe your son to be. I feel like I am stuck between two worlds; the medical world and my observations of my daughter as her mother. We're just starting the menagerie of tests to rule out any medical reason why she eats so little. I know how frustrating it can be to watch your kid not eat enough, day in and day out. I hope you're able to stay positive!

Caren said...

Reading your post actually brought tears to my eyes. I too have a son that is failure to thrive. Your list sounds similar to ours. Pretzels, cheese, mandarin oranges and not much of anything else. We see a GI specialist b/c my boy is 19 months old and only weighs 20 pounds. We add something called benecalorie to his milk which sometimes he drinks and sometimes he does not. The benecalorie is 330 calories with 7 grams of protein in just 2.5 fluid ounces. You can buy it online but I would ask your doctor of course. Without it I do not know what my boy would weigh. We have dome all the tricks as you have mentioned and nothing seems to work. We are back to the doctor in one week to have a follow-up. I am sure it won't be a happy day. I am frustrated to the point that I do cry almost every day and while I am so sorry that you have the same situation I do find comfort in knowing that I am not alone. My incrediable active happy and constantly laughing little man is still a mystery to me on the eating front. I hope that it is true that one day they will be eating us out of house and home.

Anonymous said...

I too have a daughter who will most of the time not eat. Your story is so much like mine I can't believe it. She will be two soon and is under 20lbs. We are faced with doctors recommending a feeding tube if she doesn't "start catching up" and yet she is very happy and full of energy. People call her a fussy eater. I wish that that is what it was. A fussy eater would at least eat. The things that she will eat (yoghurt, bananas, cheerios, raisins) she is now starting to not eat these either. I dread feeding her at times. The worst part is is that it is an issue every day, all day. Even if you have one good day where they will eat well and eat something nutritious - that is just one day. The next day will not neccessarily be the same and so you constantly feel that any progress you have made can be undone very quickly. I feel that I have tried everything to get her to eat and most days I am content thinking that she is fine and that is just how she is but it is hard.
Good luck with it and be strong!

Brookie said...

I wish I had answers for you. My youngest daughter has been labeled 'failure to thrive' by her pediatrician. I made her first appointment with the GI specialist today. What I'm longing for is an answer, or some sort of control over the situation so that she gains weight and can in fact 'thrive'. Part of me says she is the way God has made her, and she was meant to be small. That I can live with. The other part is pulling at me telling me it just isn't normal for a child to have no appetite...ever!

We've had her on a high calorie diet for 6 months +. She enjoys her Carnation most of the time, but that's about it. As someone mentioned previously, she is also very grossed out by textures (buttery, greasy, thick, or gooey) and unfortunately most high calorie food is just that. She'll snack on a little bit of cereal, seems to be the only thing she eats more than 2-3 bites of. Somedays I'm lucky to get that much in her. Whoever said not to worry, that a child will eat when they are hungry, obviously never met a child like mine!

It is comforting to hear of others in similar situations. I do wish their were more resolutions, however. What can I expect from the first G.I. appointment?

Kristi said...

I just wanted to say that when searching under failure to thrive on the internet, I came across your blog. My son, Joseph, was born with a cleft lip and palate. While we were never diagnosed (that I know of) with failure to thrive, he was off the charts there for a while in his weight. We saw a nutrionist, a gastroenterologist, speech pathologist and now an occupational therapist to help with what they are calling food aversions and sensory issues. My son, too, is extremely bright and began "dropping foods" off of his menu at around 18 months of age; although, we were concerned about his weight well before that. I have seen great improvement from where we began six months ago with the speech pathologist. She has set up some ground rules for us to follow and Joe is now off of all Pediasure suplements and holding steady with is weight. He too is an active kiddo who never lacked energy or brain power! I feel your pain with this issue. I hope this helps you know that there are tons of others out there with this same issue. BTW, who was your son's craniofacial surgeon?
Best of luck,
Kristi
Mama to Joe

Anonymous said...

My son is almost two and weighs 21 pounds. I give him two cups a day of 700 calorie drinks that consist of whole whipping cream, carnation, liquid vitamins, and whole milk. He gets his nutrients and vitamins, but he nearly refuses to eat. Like most on here, he loves the mandarin oranges the most. That is about it. He goes from time to time eating some things and completely stops the next. It is frustrating to say the least. I fluctuate on my emotions and hope for the day my son wants to eat. Please keep this updated as I will. I would like some hope. Take care folks.

Keith

Anonymous said...

I have an update. My wife and I took my son a few months ago to a new pediatrition and she sent our son Eli off for a battery of tests. She found that he had an unusually high acid level in his blood. She diagnosed him with RTA (Renal Tubular Acidosis). We give him a medication every eight hours and it has worked some. My wife and I took him off of it last week and his appetite virtually went away. So we put him back on it two days ago and his appetite has picked up, so it seems as if she is correct in diagnosis. The alkaline blood depresses appetite. I would recommend everyone look into some sort of kidney ailment to see if that might be your childs problem as it is mine. I will throw in more updates. Take care and good luck. I feel everyones pain.

Keith

Anonymous said...

My son - 16 months - 20 pounds - >3% in weight was recently diagnosised with Renal Tubular Acidosis. He has a very small appetite, but will drink a lot of milk. We have been on medicine 3X's a day for a month. We will go back for blood work and weight check next week to see if any progess is made in the last month. It is so hard seeing our son not what to eat, but he is a happy kid, so we just deal. Does anyone have these issues?

savin4amaid said...

Im a fostermom and I have some experience in this...One of my own was on the verge of ftt, but turned out to be a wheat allergy, a foster baby of two years is ftt eventhough he ate constantly, looks like milk/soy allergy and is starting to bulk up. But the one that is most like your story is fosterbaby with heart condition and a feeding tube. She has had several surgeories and hospitalizations. She was afraid of doctors and not only a picky eater but also seemed afraid to eat. The girl wouldnt eat anything for a while. Then ice cream and pudding were ok but that was it. The way that we finally really shanged this was not making a big deal out of it. We also invited friends over several times a week for several weeks and would set her in her high chair in the kitchen while we completely ignored her did things like have whipped cream fights in the kitchen and bake cookies or candies and laugh and play and feed each other the choc or cookie dough. We would seriously ignore her to the point that shed really have to scream at us before wed pay her any attention. Then wed be like oh did you want to play and wed play with her for a minute and accidentally leave a spoon with some smeared on it on her tray and go back to ignoring her. At first shed just throw the spoon down, then after a few "parties" shed take a taste and make a look like we just fed her poison and throw it down and scream agrily at us, but after a cpl weeks she took a bite and smiled. needless to say i gained a few pounds right along with her, but she took a bite of a new food and smiled. She decided it was a game she wanted to play. the thing is, especially with kids who cant control whats going on medically, they have to find something they can control. The only things kids can truly control is what comes in and what goes out. It probably is a mix now of the food aversion (picky eating) and a need to gain control over there environment in order to handle their situational and real stress and fears. This was not, however, the end of the battle so to speak, but only the very beginning. We used many tricks and alot of games we played that would get us through a new bit or a new food....if youre interested in more, email me thmdwoods@aol.com...but she is now 20 lbs and i think shell prob be off her feeding machine in the next six months to a year, but thats just my opinion...

Christy said...

I just ran across your blog while googling "failure to thrive GI." I realize it has been a long time since you wrote this, so I'm curious to know how things progressed in the meantime.....

My son is 21 months and weighs 18 pounds. Your blog reminded me sooooo much of my situation. We have ruled everything out from allergies to thyroid conditions to cystic fibrosis. We're on our way to a GI doctor next week. *sigh* It's comforting to know other people have gone through similar issues.

Kathy said...

My son just got the FTT label, too, and I feel your angst. I have a whirlwind of a child who has a feeding delay contributing to his GI-founded problem. Good luck to you and your son in kicking the issue ... by the way, I love your attitude. Have a great one!

adam said...

Hi everyone. I have a FTT too. Woo hoo!

He's 3 yrs old now and weighs 25 lbs. We just did a sleep study to see if he has sleep apnea. If he does we will take his tonsils and adenoids out. But who knows if this will help. My wife and I are feeling so desperate for answers and none of our doctors are providing any answers. We did a 6 week feeding program at Johns Hopkins and that put weight on him, but did nothing to improve his long-term success. Now we're meeting with a team from Childrens Hospital in DC. A lot of doctors say it's "behavioral" but we dont buy that theory anymore. How can a kid drink, but them choke on solid foods to the point that they are so mental from food that they throw up??? Does anyone have any suggestions on tests to do? We did an endoscopy and that came back negative. Maybe a gene test?

I feel everyone's frustration and pain! Hang in there.

Sara said...

My 3 year old also has FTT and will eat very few foods, but he is slowly making progress and gaining weight. We have been working with a dietician who has helped steer us in the right direction using foods he already eats to get him to eat other foods. Her website is http://www.feeding-underweight-children.com. She does phone consults as well. I would recommend anyone with FTT get a good nutritionist to consult with.

Anonymous said...

I have a son who was not as bad, but did come close. I tried many mant times to introduce new things, and also tried many approaches: don't get up till you finish, I will take a toy away if you don't take a bite, allowing him to make his choice and think that he will come back when he is hungry and he never did. He was never hungry and hated feeding time. when he was almost 3 years old, he got a diagnoses and it was a mracle, he was very iron deficient! He not only needed iron, but more than the usual dose reccomended. This despite him taking a multivitamin everyday. Once on the iron, his appetite was great, but he was still picky. Knowing that he needed to gain weight I let him eat whatever he wanted whenever he wanted. So, for meal times he had tofu nuggets by veggie patch for months on end, a peanut butter sandwhich for breakfast and lunch at the daycare was the time in the day he got to explore. It ook time, but now that he is 5, he is slowly much much more adventurous, he eats meat now, lobster, pastas, potatoes, broccoli, cauliflower and I never thought I would see the day. He is back up on the chart and in Kindergarten being sent a sandwhich lunch and coming home with an empty lunch box! Don't give up, try different and new approaches and feed him what he likes over and over again so that he eats something at each meal. The more he does eat the hungrier he will eventually be. Keep up with medical consults to rule out any problems. There are vitamins and calorie inhancers that are invisible that you can sprinkle on any food he eats or drinks. As well, if you were to switch to formula, you could hyperconcentrate it with the advice of a Dr. which may offer him more calories. good luck and don't despair!

Anonymous said...

Snap! Our situation is the same with vurtually the same list of accepted foods. Wish I know what to do. Our child though differs in that she often doesn't always have the energy to play in the park or run around. She will often sit and watch the other children, and is very often absentminded with tiredness. Nightmare. I wish I knew what to do. I'm pretty sure that she doesn't have anything medically wrong (we're doing all the tests now), she has just got a psychological hang up on the whole thing. She's a clever wee child.
How is your child doing now, has he started to eat more?

erinmc said...

Our son has FTT, 16 months. 17lb 13oz. 14th percentile on height and 35th percentile on head size, so he's like a bobblehead. Can't walk, won't even try to stand up without something to assist in pulling up.

He's bright, and funny, and sweet like a sour patch kid (bites your hand, then leans in for an apologetic kiss). He's my world. He eats everything from Thai to tuna to liver and onions, but has dropped 2 ounces over the last 7 months. He's drinking 2 bottles of PediaSure per day. And he's adopted so we have no idea if there are genetic conditions at play.

Hopefully the diagnostic specialist at Children's can help, but I foresee a stretch of anxious waiting and worry in the future.