Like a spider enveloping her prey, Karen Currie moves in to swaddle her young son in a white flannel hospital sheet.
His mummified body lies on a gurney.
She springs onto the bed and wraps her arms and legs around her son so he can’t get free. His father, Matt, holds Jake’s head in his hands.
Jake fights – seeking freedom with every ounce of might he possesses.
“Mommy don’t. Let me go,” the toddler cries. “I don’t want a tube mommy.”
The howls resonate into the recesses of his mother’s heart.
“No mommy. No mommy. No.”
It’s a far cry from only hours earlier.
The family strolled along the seawall taking in the sights. Then Jake coughed and vomited up his nasogastric tube.
The three-year-old suffers from an uncommon disorder, eosinophilic esophagitis. He’s allergic to food and needs to receive an amino acid formula through the tube or he’ll starve.
On the gurney, Jake tries to shake free. His chubby cheeks grow red and sweat trickles across his skin from the exertion.
The nurse breaks open the protective packaging keeping a nasogastric tube sterile. She squirts lubricating jelly on the end and starts to insert it into Jake’s nose.
She wriggles it slowly into his nasal cavity, moving it down his esophagus into his stomach. All 40 centimeters must go in.
Sedatives that would make the procedure easier are useless – they don’t affect Jake like other children.
Uncontrolled tears slide down Karen’s cheeks.
“It’s OK mom,” says the pediatrician, stroking Karen’s arm reassuringly. “You can do this.”
Jake’s screams intensify – a crescendo of pain and protest.
The procedure feels inhuman, torturous, to Jake’s parents. It’s a living nightmare.
They’re angry because they know there is an alternative – the surgical insertion of a gastrostomy tube in Jake’s stomach that he can’t shake loose.
Why won’t the doctors listen? Why won’t they do the procedure and stop their son from needlessly suffering?
The nurse completes the tube insertion. And the foursome watches Jake to see if it’s been placed correctly.
Jake is silent. His breath ceases.
“Is it in his lungs?” wonders Matt.
Moments become centuries as Karen looks down at her son’s limp body, cradled in her arms. Anguish and fear make a nest in her mind.
The pediatrician calls for an X-ray to check the tube’s placement, but as it’s rolled into the hospital room, Jake begins to stir.
The nurse wipes the sweat from his face and he perks up. Jake remains locked in his parent’s grasp for 15 more minutes as they wait for the sweat to dry before they can tape the tube to his face.
“How long will this tube last?” thinks Matt, looking at his son. “When will this ever end?”
Five times they revisit the hospital to re-insert the tube. Then finally, Jake’s gastrostomy tube surgery is scheduled for September.
Feeding through the gastrostomy tube leaves the traumatic ER visits in the past. Weeks trickle by.
With the support of an allergist, the family starts Jake on food trials. One food is introduced in seclusion to ensure the tests are accurate.
Wheat, soy and corn trials are unsuccessful. Jake wakes in the middle of the night screaming and crying. During the day he’s cranky and vomits.
The allergist suggests banana, because it’s the least likely to have a reaction.
Karen brings some home, cuts them up and places them in a small bowl.
“Jake,” says Karen, as she calls him to the living room’s green leather sofa. She tries to make it as casual as possible.
“You can try this,” says Karen.
“No. I don’t want to. I don’t want it,” he replies, pushing the bowl away.
She urges him to take a bite. Karen holds out hope that this could be the one food he can eat, but in the back of her mind she’s sure it will make him sick.
Tears stream down Jake’s face as she continues to ask him to eat the banana.
For 45 minutes, the two are locked in a battle of persistence.
Jake relents.
He picks up a piece and pops it in his mouth. Then he gets excited. He’s eating and it tastes good.
An hour later the excitement fades. He vomits. Then he lies on the living room floor clutching his stomach.
“No. Banana hurt. Banana owie. Banana yuck,” he cries.
The symptoms worsen as the day progresses. The next day it begins again – the coaxing to try and make him eat a piece.
Karen and Matt try to make Jake eat banana again to ensure it’s a valid trial – knowing what they are feeding their son could make him sick again. A rollercoaster of emotions ripples through them as they continue.
“No more banana mom,” says Jake.
Another night of pain, diarrhea and vomiting.
They stop the trial.
In the new year, they’ll start again, searching for a food their child’s body won’t reject. They know because Jake’s eosinophilic esophagitis is so severe, it could take years.
Allergy disorder diagnosed more often
Jake Currie looks like a typical, healthy three-year-old boy – people would never guess he suffers pain when he tries to eat.
He treats food like the enemy, refusing to try it because he knows his tummy will hurt and he could end up vomiting. Even a small amount can trigger an episode.
Since infancy, his parents, Karen and Matt Currie, knew there was something wrong with their son beyond normal baby colic.
As he grew, the symptoms worsened. Many times they were told he had acid reflux, but he never responded to the treatment. It took persistence to get the diagnosis of eosinophilic esophagitis. Jake case is severe. He can’t eat food without vomiting, stomach pain or diarrhea.
He was given a nasogastric tube to be fed an amino acid formula. The tube had to be re-inserted five or six times, until the surgical insertion of a gastrostomy tube last fall. The couple also discovered their two-year old daughter Margaret also suffers from EE.
The Curries are forming the Canadian Society for Eosinophilic Disorders to help support families dealing with the condition. They are in the process of registering the society with the Canadian Revenue Agency to get charitable status.
“We want to branch out and hopefully find other families,” said Karen.
People interested in helping create the society or who want more information can go to www.csed.ca or call 250-755-6998.
Dr. Edmond Chan, clinical assistant professor at University of British Columbia’s division of allergy at B.C. Children’s Hospital, said the disorder is emerging more frequently because of two factors: recognition of the disorder and an increase in cases.
“This is still a relatively newly recognized condition and there is much that remains to be learned about it,” said Chan. “There is a perception among Canadian specialists that the condition is recognized more frequently and recognized in Canada as well just like other developed countries.”
Chan said the prevalence of the disorder isn’t easy to capture.
In major U.S. centres, one or two cases are being diagnosed per 10,000 people per year and the overall prevalence over many years could be about one in 1,000, he said.
Chan said there isn’t certainty about the best form of management for the disease, as people’s severity and reaction to treatments can vary greatly.
Three main management practices for patients include swallowing a topical corticosteroid in a relatively low dosage so it coats the esophagus to suppress inflammation; trying the six-food elimination diet where the person removes milk, eggs, wheat, soy, peanuts and seafood; and the elemental diet, which consists of drinking an amino acid formula with no allergens present.
The cause of eosinophilic disorders is unclear, but they are typically diagnosed in a person who sufferers from other allergic conditions.
Chan said studies suggest the management of other allergy conditions also help control eosinophilic esophagitis.
According to the American Partnership for Eosinophilic Disorders, people with the condition have a high number of eosinophils in the esophagus. Eosinophils are a type of white blood cell that is an important component of the immune system.
The only way to positively identify the disorder is with a biopsy, because the disorder shares many symptoms with other conditions such as acid reflux.
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