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The New Normal Takes the Cake: American Children and Eosinophilic Esophagitis

Posted Feb 01 2011 12:00am

FlamingBirthdayCake By Judy Converse

How many kids do you know who would turn down a birthday cake? Few, if any.  But there are now millions of kids in the US who must, due to life threatening  anaphylaxis from foods, dangerous food allergiesgluten intolerance , or a painful condition called  eosinophilic esophagitis  (EE) – all conditions that have risen dramatically in the last twenty-five years.

How many moms do you know who would mow you down with a tractor if you suggested their kids reject a fake birthday cake? Apparently there are a lot of them, and I made them furious with a recent  blog post  on this topic.  In my pediatric nutrition practice, I’ve worked with kids with EE diagnoses. And, with kids who have severe food allergy, growth failure, juvenile rheumatoid arthritis, gluten sensitivity, asthma, and autism - all conditions that usually involve inflammation of some sort.  These problems can overlap, when it comes to nutrition interventions. My own son, now 14, has jostled multiple food allergies and sensitivities since infancy. Still, I had never heard of the fake cake strategy.  For kids with EE who simply can’t eat food, a prop cake is a meaningful and important symbol.  A small niche has grown to serve these kids inedible cakes made of playdough or foam. These cakes are vehicles for candles, wishes, hopes, and dreams – but not ice cream, forks, or spoons.

So why the mom-rage? Because the last thing a parent wants is to be judged or criticized. Especially parents who are embroiled in difficult, frightening, expensive, and uncertain journeys with their children’s health, like EE. By saying that I thought kids with EE shouldn’t need play dough cakes, I tapped the anguish these parents juggle daily as they navigate life with little to no real food for their kids. The play-dough cake is the best they can do at birthday time, and the kids are grateful for it. Who am I to question, or suggest I might know something that the expert teams they consult did not? If they’ve seen the highest experts in the land and their children still have no prognosis of ever eating food, who am I to wonder aloud that this is wrong?

I do wonder. I wonder if the children of these parents could heal too, enough to tolerate some foods again, as I have seen children in my practice do. Or if the very idea of healing beyond what their doctors thought might be possible simply triggers too much shock, rage, guilt, and fear to be believed for some parents. But the scrutiny I raise here is meant for our pediatric health care paradigm, not families. Why do parents feel scrutinized, when the health officials and providers who should be guiding us have no particular answers for why this is happening?

I wonder how children in our country became so sick so often that we have websites devoted to providing fake cakes for them.

I wonder how food allergies became so common and so lethal, that bringing a peanut butter sandwich to school can threaten the life of a classmate.

I wonder how many more moms there are (I’ve met two) who have lost an infant to SIDS, and are raising a child with autism. I wonder how much anguish a parent can take, before simply dying of a broken heart, or exhaustion, from caring for a high needs, chronically ill child. I wonder how SIDS became the third leading cause of death for US infants, and why it’s safer for infants to be born in 45 other countries than it is here. US infants are more likely to die by their first birthday (foam cake and all) than infants in 45 other countries. Our world ranking for infant mortality has been in an embarrassing free fall for decades. Why?

I wonder why 1% of our pediatric population now has autism, a hundred-fold increase since 1980 now affecting hundreds of thousands of children, and why the CDC keeps using euphemisms like “mystery” instead of honest phrasing like “public health crisis” to describe it.

I wonder why children with EE are assessed and treated by the gastroenterology community, while children with autism and EE are frequently sent home with bandaid medications and no diagnostics, even though their presentations for symptoms and history are often similar.

I wonder how pediatricians reconcile that children today are more chronically ill and disabled than ever in US history, despite using more pediatricians’ tools than ever before: Prescription medications, and vaccines.  Children born today are more likely to live shorter lives than their parents, a reversal of trends of the last century.

I wonder when pediatricians began teaching parents to be more afraid of chickenpox, flu, or measles, than autism, EE, or epilepsy. And why?

I wonder why the pediatric burden for diabetes and Crohn’s disease – diseases that historically afflicted adults more often - has escalated so dramatically in recent decades.  Children now frequently get what were thought of as adult chronic diseases before 1980. Why?

I wonder about the immune system’s interplay with these conditions, and about recent findings that show how dependent humans are on the biome in their guts – that is, all the microbes we host, and how they work for us by digesting food, fighting pathogens, or running interference on inflammatory triggers.  If establishing a healthy gut biome is as critical for normal growth, development, and immune function as this work is indicating, I wonder what we have set in motion, by giving vaccines and antibiotics to infants so early, so aggressively, so wantonly - all tools that can disrupt that gut biome. Are these chronic conditions describing a worst-case, end-result scenario of this delicate switchboard – a newborn’s intestine – gone awry with unintended encoding? Does restoring that biome afford a child some recovery? A recent piece in  Discover Magazine  implies this might a hopeful path, as it examines research on just how important a new baby’s gut microflora is to brain development, while  other research  shows how crucial this is for avoiding asthma and inflammatory conditions.

Judy Converse is the founder of  Nutrition Care for Children .  She has been a registered dietitian since 1989, and licensed with the Board of Dietitians and Nutritionists in Massachusetts since 2000. She has a master's degree in public health nutrition from the University of Hawaii, and a bachelor's degree in food science and human nutrition from the University of Vermont. Prior to setting up her practice, Judy worked as a nutrition educator for Hawaii Medical Service Association, and as an outpatient dietitian for Kaiser Permanente. She has authored two books with a third due in fall 2010 (Perigee Press). She published the first accredited learning module on autism and nutrition, testified before state and federal legislators for safer vaccines, and lectures to both parent and professional audiences on nutrition/special diets for autism, child nutrition, food allergies, and nutrition care process for autism. Originally from New England, she lives in Colorado with her husband and son.

Lee Silsby logo 09 The treatment category is sponsored by Lee Silsby , the leader in quality compounded medications for autism.

Posted by Age of Autism at February 19, 2011 at 5:46 AM in Treatment Permalink

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