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Disorder causes boy's body to reject almost all food

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John Hemme gripped the empty formula can as he toddled toward his mother, Margie, who sat on the couch waving a bottle toward him.

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17-month-old John Hemme laughs while playing in his home in Martinez. He has eosinophilic esophagitis, where large numbers of immune cells normally triggered by foreign antigens like allergens line the esophagus, where they are not normally found.   SARA CALDWELL/STAFF
17-month-old John Hemme laughs while playing in his home in Martinez. He has eosinophilic esophagitis, where large numbers of immune cells normally triggered by foreign antigens like allergens line the esophagus, where they are not normally found.

“Bubble,” said 17-month-old John.

“Bottle?” his mother said, coaxing him to take a quick drink before taking off again across the carpet. The formula in the bottle is the only thing his parents have found so far that little John can stomach.

After months of constant, daily vomiting no matter what he was fed, John was finally diagnosed seven months ago with eosinophilic esophagitis, a rare disorder in which immune cells that normally react to viruses or allergens line his esophagus, where they are normally not found.

Though several allergy tests showed that he might be able to tolerate a certain kind of food, there is not one yet that does not trigger a reaction, his parents said.

It began the day after he was born, with vomiting and spitting up, and continued nonstop, Margie Hemme said.

“By two weeks he was profusely vomiting,” she said. “It was constant throwing up.”

In those two weeks, he went from nearly nine pounds at birth to seven pounds. What followed was months of misdiagnosis – that it was just reflux disease, that he was just “spitting up,” that it was milk intolerance, Margie Hemme said.

When the violent vomiting continued and John was growing slowly and missing developmental milestones, she decided to switch pediatricians.

The new doctor referred her to a gastrointestinal specialist. An endoscopy revealed the problem and at 10 months he was finally diagnosed correctly. For the past several months, all he has been able to ingest is EleCare hypoallergenic formula from a bottle.

“He’s improved leaps and bounds from eliminating all food,” Margie Hemme said.

The disorder affects about one in 2,000 kids and has increased two- to tenfold over the past 10 years, according to the American Partnership for Eosinophilic Disorders.

That is probably for two reasons, said Dr. Glenn T. Furuta, the director of the Gastrointestinal Eosinophilic Diseases Program at Children’s Hospital Colorado and National Jewish Health.

“I do think it is happening more frequently now, but the other is people weren’t looking for this,” he said. “They really didn’t know what it was. They didn’t even know that it existed.”

As recently as five years ago, there weren’t even clear clinical guidelines to diagnose it, Furuta said, adding that there can be a wide spectrum of severity.

“It is unusual to not have any foods that they can tolerate, but it does happen with some,” he said.

Treatment is typically diet restriction or steroids.

“We use both, but we try to individualize with the family’s needs and what their concerns are,” Furuta said.

The Hemmes said they are not choosing steroids for now because of concerns about the drugs affecting John’s growth, which is already somewhat behind. He only started walking a few weeks ago, though he zips along now, picking up cars and racing them off tabletops, throwing and chasing a big blue ball.

“Ball,” John said, which is one of his “B” words.

“I don’t know where he learned ‘bubble,’” Margie Hemme said.

Because he will only take a bottle, which his parents have to hold for him, eating out can be awkward and invite rude stares. Servers have a hard time understanding why his parents don’t order for him, Doug Hemme said.

“People try and push children’s menus on us,” he said.

While he undergoes therapy to help him catch up physically, his parents are getting ready to start another food trial, hoping “to find any safe food that will give him all the nutrients he needs” and that will stay down.

Wearing a shirt meant for a 9-month-old, John smiled constantly as he raced around his living room, hunting down more cars as his parents kept a watchful eye on the three baby gates.

“He likes to go where he’s not supposed to,” Doug said, smiling.

“Everyone tells me he’s the happiest baby they ever saw,” Margie Hemme said. “People don’t believe he’s sick.”

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Just My Opinion
Just My Opinion 05/21/12 - 04:59 am
Too bad they waited so long

Too bad they waited so long to switch pediatricians, but this couple just didn't know to. Pediatricians are sometimes in a no-win situation. When children are so young, it is often extremely difficult for the pediatrician to make the proper diagnosis because they are working with a body that is still growing....a malady that seems to be one thing can actually be something more involved or more simple. Sounds to me like their first pediatrician "hung on" too long and didn't refer the couple to a specialist. Their second pediatrician had the luxury of knowing what all had already been done for the child, so it was an easier decision to refer him. Good luck to this child and this couple. Hope the future is brighter!

zaramichelle 05/21/12 - 12:07 pm

I went through the same thing with my son until he was finally diagnosed at 8 months. He is now three and doing well with close monitoring and a diet of mostly formula. He was diagnosed in Augusta but we now live in Alabama and he is being treated here in Birmingham. Good luck to this family! Been there so I know how frustrating it is...God Bless :)

GioTorLyndie 05/21/12 - 01:03 pm
Just My cautious when judging.

Knowing this couple personally, and knowing how tirelessly they work to advocate for baby John...I feel like your opinion of "too bad they waited so long" was unfounded and rather ignorant. Anyone (regardless of knowing them of not) who reads this article can tell by the phrasing the writter uses that even he saw what amazing parents these two are. As far as waiting so long to change peds...she didn't wait too long. She was working with her pediatrician to try and find a correct diagnosis, KNOWING that he has gathered all sorts of information already, before trying to start all over with another ped. It's a losing battle either way. When she was calling the pediatrician constantly, she was looked at like a crazy first time mom...but when she "waits" several months before changing pediatricians she waited too long. If you read about EoE you will understand that it is a very rare condition. Some people don't have the serious food allergies manifest until later in life. It is really in it's infancy as being a disease that is diagnosed. That being said, the main goal of this article was to raise awareness, so that more parents can know they aren't alone. Also,if you think there is something besides acid reflux (most common diagnosis) wrong with your child/baby that you should continually hound the pediatricians until you get answers. With John they have drs appointments of some sort sometimes everyday of the work week. 5 days 5 appointments. It takes a very special kind of person to do all this work with a smile on your face. John is seriously the happiest baby I know, he rarely ever frowns and has the most infectious laugh that could brighten anyone's day. I think something good to also take from this is to stop acting omnipotent and pushing how we feel as parents onto others. No two children are the same, neither are any two parents. Having 3 children of my own, being a stay at home mom, and constantly having people say how wonderful a job my husband and I do with our children...I have to say Doug and Margie are 10 times the parents we are. John is incredibly lucky to have them. A lot of people wouldn't be strong enough to endure what they have gone through. I look at her everyday and thank God my three are healthy because it would tear me apart and I know I wouldn't be as high functioning or as able to push through every day with the grace she has.

Just My Opinion
Just My Opinion 05/21/12 - 08:56 pm
Gio, I think you are being

Gio, I think you are being too sensitive here. I never implied that these parents were negligent in getting help for their child...never said that. I simply said that it was too bad that they waited too long to switch pediatricians. Now, that does not mean that they just sat on their hands waiting for some miracle to happen....they waited on the good doctor to find a reason for their child's problem and to effectively treat it. I would bet you $100 that both parents wished, had they known what the course of the first pediatrician's results would have been, that they would have JUMPED at their decision to switch pediatricians sooner. Of course they would! But they didn't know that....nobody knows what the future holds.
And when you wrote " stop acting omnipotent and pushing how we feel as parents onto others.", I don't understand that statement at all. I think ALL PARENTS can understand alittle bit of how these good people feel because there has probably NEVER been a baby who has not gone through a period of persistent vomiting of unknown etiology.
Thank you for your comments.

LizSmith17 05/22/12 - 11:16 am
More of their story

This is my cousin and her son, and for anyone who is interested in finding out more about how their family is living with this disease, Margie has a blog about it. There's more about John and what steps they've been taking to deal with everything surrounding the situation.

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