A Matter of Life & Death
Posted on: Sunday, 19 February 2006, 12:00 CST
By LISA SMITH World Scene Writer
It's just a bite of food for most, but for those with food allergies, it can become a matter of life & death
It was just a piece of gum, a treat Matt's mom gave him. But as soon as he put it between his lips, his mouth started to tingle and his tongue started to swell. "He had the gum in his mouth for about 10 seconds before he spit it out. He told me to check the ingredients," Shanna Jewell said.
The culprit -- casein, a milk protein.
Matt, 10, has severe, life-threatening food allergies. Among the things that trigger his extreme reactions are all dairy products, peanuts, walnuts, cashews and sulfa drugs. If he ingests one of these allergens, it becomes a life-and-death situation. That's on top of his asthma.
"Who would have thought there was milk in that gum?" Jewell said. "I've been checking labels since he was 6 months old. It's nerve- racking."
An infant's diet during the first year of his or her life is the most powerful determinant of growth and development, and food allergies are the most common health problem, according to the Food Allergy and Anaphylaxis Network at www.foodallergy.org. There is no cure for food allergies -- avoidance is the only way to prevent an allergic reaction.
Nearly 11 million Americans suffer from true food allergies, an immune system response to a food that the body mistakenly believes is harmful. Once the immune system decides that a particular food is harmful, it creates specific antibodies to it, so that the next time the individual eats that food, the immune system releases massive amounts of chemicals, including histamine, to protect the body.
In severe cases such as Matt's, these chemicals can trigger anaphylaxis, a sudden, severe, potentially fatal syndrome that affects the respiratory system, gastrointestinal tract, skin and cardiovascular system.
Matt's food allergies are so severe that his mother wouldn't let him go to school until he was 8 years old.
"I couldn't take a chance that he would eat or come into contact with something that could kill him," Jewell said. "It was safer to keep him home until he fully understood how serious an anaphylaxis reaction is -- that he could die from it."
Jewell prepares Matt's lunch daily, and he eats alone in the hallway of his elementary school.
"He's not even allowed in the cafeteria," Jewell said.
"Matt's condition is rare," said Dr. Jane Purser, of the Tulsa Allergy Clinic, who has treated Matt since he was an infant.
As in many anaphylaxis patients, there is a genetic component to Matt's allergies.
"Asthma is hereditary," Purser said. "And when both parents have asthma and nasal allergies, as Matt's parents did, there is much likelihood that the couple's offspring will suffer as well."
"Matt looked horrible as a baby," Purser continued. "He was always red, and his skin peeled a lot."
Although an individual can be allergic to any food, such as fruits and vegetables or meats, eight foods account for 90 percent of all food allergic reactions -- milk, eggs, peanuts, tree nuts (walnuts, cashews), fish, shellfish, soy and wheat.
For the roughly 4 percent of Americans with food allergies, knowing what's in their food is serious business. Anaphylaxis reactions kill an average of 150 people annually and result in 30,000 visits to emergency rooms.
A new federal law -- the Food Allergen Labeling and Consumer Protection Act -- went into effect Jan. 1 and requires manufacturers to label the eight allergy-triggering substances in common language.
No longer is "artificial flavoring" sufficient on a food label. Eggs are listed instead of albumin; milk for lactoferrin; soy for edamame and wheat for seitan.
But even with the new law in place, those affected by food allergies can't lower their guard. The law doesn't cover meat, poultry and egg products or fruits and vegetables in their natural state, so careful label reading is still a must.
"It's very stressful for parents with a child who suffers from severe food allergies. It can definitely cause problems in the home - - sometimes even divorce," Purser said.
"I'm constantly adapting while, at the same time, trying to keep life as normal as possible," Jewell said. "There have been a few times when I wasn't around and Matt has gone into anaphylactic shock. It's terrifying."
There was the time the daycare center gave Matt milk, sending him into shock. He was within minutes of death.
Then there was the time, again in daycare, when he was playing with some homemade dough and went into shock. There have been other close calls as well.
"Other than school, I rarely let him out of my sight," Jewell said. "When he's invited to a birthday party, I go, too, and I take Matt's snacks."
With Matt, anaphylactic shock begins with itchy skin hives. His lips, tongue and eyes swell, and the whites of his eyes sometimes puff into a gelatinous state. He vomits. His throat begins to close and he has trouble breathing. His blood pressure plummets.
And as his body shuts down, he's too weak to alert anyone.
If he doesn't get a shot of epinephrine within minutes, Matt could die.
He wears a medical idenfitication bracelet, and he has carried self-injectible epinephrine (EpiPen) since he was 2 years old. He also carries steroids, medication, cream and vinyl gloves.
"Matt is very aware of anaphylactic symptoms," Jewell said. "As he gets older, he's becoming more and more of an advocate for himself."
Parents of children with exteme allergies were disappointed when a possible preventative treatment was denied FDA approval.
The drug Xolair, used to treat severe asthma for patients 12 and older, was recently stopped as a treatment to prevent peanut- allergy reactions because of safety concerns, Purser said.
Two children experienced life-threatening allergic reactions when they were given trace amounts of peanut protein to evaluate the severity of their allergy. Neither child had received Xolair, but because they were involved in the study, the study itself was scrapped.
Genentech Inc., the maker of Xolair, said in a recent article on the Food Allergy and Anaphylaxis Network Web site that the company remained committed to finding a path forward to test Xolair for food allergy.
"Our hopes were pinned on this drug," Purser said. "While patient safety is a top priority, I look forward to the studies resuming. Xolair is very effective with asthma patients and hopefully will offer some relief to food allergy patients as well."
Lisa Smith 581-8489
lisa.smith@tulsaworld.com
Source: Tulsa World
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