Thanks for all the well wishes for Roo's Friday GI appointment! Overall things went as expected with a few surprises.
As far as the GI doc is concerned, Roo's growth is following a curve. He's not following "The" growth chart, but he is growing. He weighed 20 pounds 15 ounces and that put him on a tiny slanting upward arc from where he was three months ago at 19 pounds 10 ounces. Forgive me for not mentioning to the doctor that the previous weight was taken while he was naked and this one while fully clothed and diapered. I was all too absorbed by the fact that his height has increased to 32.5 inches which is, drumroll please......officially on "The" chart. In fact, it's 10th percentile for his age on the chart. That's non-adjusted for prematurity, regular old 24-month old American boy height. Yup yup. Take that size 12-month pants! We're moving up to 18-months...as long as we can find adjustable waistbands.
The general consensus is that the eosinophilic esophagitis is not causing his vomiting anymore. Unless we alter his diet drastically, which we have not, the EoE is not likely to be causing many problems at the moment. There is no clear single cause for his eating issues and food aversion but rather a combination of EoE, regular food allergies, oral delay, reflux, and his learned avoidance behaviors.
The recommendation is to see a feeding team. We have a referral for a different GI doctor who specializes in food aversion. He works as a team with a gaggle of other specialists - speech therapist, occupational therapist, nutritionist, psychologist, etc. While Roo has seen all of these therapist types before, the beauty here is that they are all part of an integrated team. We'll see how it goes.
Roo will return to his old GI team for an EoE check-up and allergy testing in about six months. Until then it's status quo for his diet - no eggs, nuts, milk, or beef, and full steam ahead trying to get him to eat, enjoy eating, keep food down, gain weight, and grow. No problem I'm sure.
The final surprise of the appointment was that our current GI doctor is leaving Children's Memorial. I'm not thrilled since he's been good to us, and the fact that he is young, Indian, and has little twins of his own didn't hurt his reputation in our house. In retrospect, however, I'm not so sure how I feel about him performing Roo's last surgery a couple of weeks after bringing his own newborns home. Anyway, he's heading out of state to a clinic that currently has no EoE specialist.
Showing posts with label food aversion. Show all posts
Showing posts with label food aversion. Show all posts
Monday, March 15, 2010
Wednesday, February 3, 2010
Poor Eaters
Book review time.
A few weeks ago I searched for books on the topic of food aversion and didn't find much. After reading a couple of enthusiastic reviews I doled out the 20 bucks for a stuffy looking paperback called Poor Eaters by Joel Macht, Ph.D. My expectations were checked by the amateurish geometric cover design and the fact that it was published almost a decade ago, when EoE cases were far and few between. If our pediatrician, pediatric GI specialist, nutritionist, and speech therapist couldn't give us the magic formula to get Roo to eat, how could this old book possibly help? Well Mr. Macht, please accept my sincerest apologies! Poor Eaters might just save us from the g-tube yet.
To be honest, I hesitate to write this entry for fear that the progress we've made in the past couple of weeks will suddenly shatter if I dare call it that - progress. Still, we've seen changes in Roo in the past 10 days that are more encouraging than anything we've accomplished in the past 10 months. He's eating. Not always enthusiastically, but he's eating. In fact, I think he's even bulked up (gasp!) a few ounces.
I should mention that the book emphasizes eliminating any physiological issues related to eating before attempting any of Mr. Macht's techniques. For us this is an ongoing struggle. We think we've identified the allergens that affect Roo's esophagus and have eliminated them. He's off all nuts, dairy, eggs, and beef. A clean scope (upper endoscopy) at the end of November, indicated that our dietary changes were working but we are still careful when introducing any new food. And he still surprises us with a projectile vomit now and then so we just don't know for sure.
As is turns out, there's no magic formula. We were already doing many of the suggestions in the book - using contingencies, finding the success points on which to build, ending meals on a positive note, etc. Somehow tweaking our methods, having a clear, measurable path for progress, and being able to relax in knowing that other children have come through this has made all the difference. So thank you, Mr. Macht. Thank you.
A few weeks ago I searched for books on the topic of food aversion and didn't find much. After reading a couple of enthusiastic reviews I doled out the 20 bucks for a stuffy looking paperback called Poor Eaters by Joel Macht, Ph.D. My expectations were checked by the amateurish geometric cover design and the fact that it was published almost a decade ago, when EoE cases were far and few between. If our pediatrician, pediatric GI specialist, nutritionist, and speech therapist couldn't give us the magic formula to get Roo to eat, how could this old book possibly help? Well Mr. Macht, please accept my sincerest apologies! Poor Eaters might just save us from the g-tube yet.
To be honest, I hesitate to write this entry for fear that the progress we've made in the past couple of weeks will suddenly shatter if I dare call it that - progress. Still, we've seen changes in Roo in the past 10 days that are more encouraging than anything we've accomplished in the past 10 months. He's eating. Not always enthusiastically, but he's eating. In fact, I think he's even bulked up (gasp!) a few ounces.
I should mention that the book emphasizes eliminating any physiological issues related to eating before attempting any of Mr. Macht's techniques. For us this is an ongoing struggle. We think we've identified the allergens that affect Roo's esophagus and have eliminated them. He's off all nuts, dairy, eggs, and beef. A clean scope (upper endoscopy) at the end of November, indicated that our dietary changes were working but we are still careful when introducing any new food. And he still surprises us with a projectile vomit now and then so we just don't know for sure.
As is turns out, there's no magic formula. We were already doing many of the suggestions in the book - using contingencies, finding the success points on which to build, ending meals on a positive note, etc. Somehow tweaking our methods, having a clear, measurable path for progress, and being able to relax in knowing that other children have come through this has made all the difference. So thank you, Mr. Macht. Thank you.
Monday, February 1, 2010
Beyond Picky
I have been reading a lot lately about picky eaters. I've heard many stories from other parents about their problem eater kids who refuse entire food groups, those who dissolve in a puddle of tears at the sight of vegetables (any vegetable!) and even one who subsisted for an entire year on grilled cheese sandwiches, blueberry yogurt and starfruit. "I swear," his mother assured me "it gets better." Well I certainly hope so. The thought of my son entering the junior high boys locker room at his current 19 pounds and 30 inches is a bit worrisome.
After all this reading, the stories, the sharing...I sympathize, I do. No one feels good that their child won't embrace veggies. Nobody wants to fight over the shred of cheese that inadvertently contaminated the plate of otherwise perfectly acceptable pasta and marinara sauce. Let me assure you, however, that Roo's eating issues go way beyond picky. One blueberry, sans skin, does not a breakfast make. Unfortunately until about a week ago, that was a typical meal for Roo. And that one blueberry? It took effort to get it in him.
I imagine there are others out there dealing with severe food/eating issues with children of all ages. The failure to thrive kids. Those who cringe at the sight of a spoon. The g-tubes. In fact I KNOW that you are indeed out there. But beyond our medical team of a nutritionist, GI doctor, and speech therapist who all specialize in eosinophilic esophagitis, I have had a heck of a time finding resources and support for dealing with more generalized food aversion in young children. So here I am.
After all this reading, the stories, the sharing...I sympathize, I do. No one feels good that their child won't embrace veggies. Nobody wants to fight over the shred of cheese that inadvertently contaminated the plate of otherwise perfectly acceptable pasta and marinara sauce. Let me assure you, however, that Roo's eating issues go way beyond picky. One blueberry, sans skin, does not a breakfast make. Unfortunately until about a week ago, that was a typical meal for Roo. And that one blueberry? It took effort to get it in him.
I imagine there are others out there dealing with severe food/eating issues with children of all ages. The failure to thrive kids. Those who cringe at the sight of a spoon. The g-tubes. In fact I KNOW that you are indeed out there. But beyond our medical team of a nutritionist, GI doctor, and speech therapist who all specialize in eosinophilic esophagitis, I have had a heck of a time finding resources and support for dealing with more generalized food aversion in young children. So here I am.
Monday, January 25, 2010
Feeding Frenzy
I used to love to cook but this whole thing is wearing on me.
My husband, Mufasa, is sneaking cold cheese curds at the kitchen counter and my 3-year-old daughter is in tears over a denied request for a peanut butter sandwich. The fact that it's almost dinner time has nothing to do with it. My 22-month-old son, Roo, has severe food allergies. No peanut butter for Roo. No cheese curds either.
After nine excruciating months of unexplained food aversion, weight loss, vomiting, and frantic night-waking, Roo was diagnosed with Eosinophilic Esophagitis (EoE). Simply put, EoE is an allergy that causes inflammation in the esophagus to the point that food can become lodged there. The worst part is that my baby suffered silently for months, always hungry, yet unable to eat due to the burning in his tiny throbbing chest. The good news is that now that we know, we're dealing with it.
Roo's EoE is food-based. He follows a strict elimination diet including no traces of dairy, eggs, nuts, or beef. Thankfully the diet seems to be working and we are thrilled that he hasn't needed more invasive measures such as tube-feeding. Still, the impact his diet has had on his appetite and our family in general is tremendous.
No more peanut butter sandwiches for my preschooler, no weekend breakfasts out at our favorite dive, no macaroni and cheese, no more “real” cheese at all. This last bit is particularly difficult for my husband who is pre-diabetic and until recently, considered cheese the mainstay of his diet.
As the daughter of a chef and a restaurateur, these concepts are completely foreign to me. I like to cook. I love to bake. I live to eat. My own childhood was spent napping under the candy counter at our family's pizza shop, baking peanut butter cookies with my mother, and sticking my fingers into all sorts of mysterious and no doubt egg-laden sauces.
Through both of my pregnancies I worried about all sorts of nightmarish scenarios, some completely rational, others not so much. I lost sleep over the prospect of scalding bath water. I had visions of inadvertently poking a sharp object through the soft spot on the top of my newborn's head. I feared my own borderline childhood obesity would manifest in my children. I suspected each smiling store clerk of being a knife-wielding maniac who cut babies out of pregnant abdomens. You get the idea. Never once did I fear that I wouldn't be able to nourish my children. I had trained my whole life for this. I couldn't wait to nurse and eventually to make my own organic baby food.
I have cabinets bursting with cookbooks featuring luscious frittatas, creamy stews, and cakes iced slicker than seal skin. Food is my gig. I never dreamed that I would struggle to provide healthy, delicious, satiating meals to my entire family and the fact that often I cannot is crushing. I pour over allergy-free and diabetic-friendly cookbooks looking for that one allowable, nourishing, crowd-pleasing meal. Thanks to frequent substitutions and specialty grocery stores, I'm getting better and learning as I go. For now, however, I assure you I have the best fed garbage can on the block.
My husband, Mufasa, is sneaking cold cheese curds at the kitchen counter and my 3-year-old daughter is in tears over a denied request for a peanut butter sandwich. The fact that it's almost dinner time has nothing to do with it. My 22-month-old son, Roo, has severe food allergies. No peanut butter for Roo. No cheese curds either.
After nine excruciating months of unexplained food aversion, weight loss, vomiting, and frantic night-waking, Roo was diagnosed with Eosinophilic Esophagitis (EoE). Simply put, EoE is an allergy that causes inflammation in the esophagus to the point that food can become lodged there. The worst part is that my baby suffered silently for months, always hungry, yet unable to eat due to the burning in his tiny throbbing chest. The good news is that now that we know, we're dealing with it.
Roo's EoE is food-based. He follows a strict elimination diet including no traces of dairy, eggs, nuts, or beef. Thankfully the diet seems to be working and we are thrilled that he hasn't needed more invasive measures such as tube-feeding. Still, the impact his diet has had on his appetite and our family in general is tremendous.
No more peanut butter sandwiches for my preschooler, no weekend breakfasts out at our favorite dive, no macaroni and cheese, no more “real” cheese at all. This last bit is particularly difficult for my husband who is pre-diabetic and until recently, considered cheese the mainstay of his diet.
As the daughter of a chef and a restaurateur, these concepts are completely foreign to me. I like to cook. I love to bake. I live to eat. My own childhood was spent napping under the candy counter at our family's pizza shop, baking peanut butter cookies with my mother, and sticking my fingers into all sorts of mysterious and no doubt egg-laden sauces.
Through both of my pregnancies I worried about all sorts of nightmarish scenarios, some completely rational, others not so much. I lost sleep over the prospect of scalding bath water. I had visions of inadvertently poking a sharp object through the soft spot on the top of my newborn's head. I feared my own borderline childhood obesity would manifest in my children. I suspected each smiling store clerk of being a knife-wielding maniac who cut babies out of pregnant abdomens. You get the idea. Never once did I fear that I wouldn't be able to nourish my children. I had trained my whole life for this. I couldn't wait to nurse and eventually to make my own organic baby food.
I have cabinets bursting with cookbooks featuring luscious frittatas, creamy stews, and cakes iced slicker than seal skin. Food is my gig. I never dreamed that I would struggle to provide healthy, delicious, satiating meals to my entire family and the fact that often I cannot is crushing. I pour over allergy-free and diabetic-friendly cookbooks looking for that one allowable, nourishing, crowd-pleasing meal. Thanks to frequent substitutions and specialty grocery stores, I'm getting better and learning as I go. For now, however, I assure you I have the best fed garbage can on the block.
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