All posts by Mary Jo Strobel

‘Food is the enemy’: Rare digestive disorder leaves Great Falls teen struggling to eat

In the News

A relatively newly described syndrome that affects a small number of people is attracting growing attention among doctors and researchers and is responsible for a series of unexpected changes for a Great Falls family.

The group of diseases, called eosinophilic gastrointestinal disorders, or EGIDs, was recognized sporadically by doctors throughout the 20th century. But only in the past two decades have the disorders captured the attention of the medical community.

“These are certainly new, and it is uncommon for us to have relatively new diseases,” said Dr. Glenn Furuta, professor of pediatrics and director of the Gastrointestinal Eosinophil Diseases Program at Children’s Hospital Colorado and the University of Colorado School of Medicine.

Fifteen-year-old Miyah Lovec has lived with the diseases her entire life.

“It started before she could talk — vomiting, constipation, hives, eczema,” said her mother, Becky Sullivan.

The feeding problems caused Lovec to grow slowly, what is referred to as “failure to thrive” today. Sullivan chalked it up at the time to having petite relatives on her father’s side.

The symptoms continued, and Lovec was put on medication for ADHD when she was young. The Sullivans were told Lovec’s symptoms may be side effects from the ADHD medication, but when Lovec stopped taking it as a sixth-grader, the symptoms persisted.

“I just ignored it,” Lovec said. “I thought I was sick.”

Even through the discomfort and bouts of sickness, Miyah has thrived and lives the life of a typical teen. She has a dry sense of humor and is a little embarrassed by her family, which includes her parents, Michael and Becky Sullivan, and younger sister, Eva, 8.

A student of art, she often draws on her arms and legs, giving herself colorful, temporary tattoos. In her free time at school, she likes to help teachers in the special education room. And she hangs out with friends, roller skating, and likes playing games on the computer and her phone.

Last summer, Lovec’s pediatrician referred her to a gastroenterologist in Billings, who, after a round of tests, including an endoscopy of her esophagus, finally provided Lovec with a diagnosis — eosinophilic esophagitis, eosinophilic colitis and eosinophilic gastritis.

That means Lovec has elevated levels of eosinophils in her esophagus, her lower colon and her stomach.

Eosinophils are white blood cells typically associated with allergic disease and parasitic infection, Furuta said.

Normally, eosinophils are present in all portions of the digestive tract except the esophagus. In eosinophlic diseases, their presence is elevated, causing inflammation or irritation of the area and causing the patient to display a host of symptoms that might include vomiting, reflux or food impaction in the upper digestive tract; or diarrhea, pain or bloody stool in the lower digestive tract.

Doctors know EGIDs affect both children and adults, and it is not a disease a child grows out of, Furuta said.

The most common EGID is eosinophilic esophagitis, known as EoE. For that disorder, male patients are known to outnumber female patients about three to one, and one to four out of every 10,000 people are affected.

The other EGIDs are so rare that exact numbers are more difficult to pin down, Furuta said.

The exact cause of EGIDs and the most effective treatment remain elusive.

EGIDs are “often associated with allergies but may be associated with unknown reactions that can cause significant symptoms in children,” Furuta said.

He added there may be a genetic component to EGIDs, too. Perhaps the people who have an EGID were born with a gene that predisposed them to the condition, and with an allergen or trigger the condition developed fully.

Eosinophilic esophagitis, or EoE, is the most common and most studied of the EGIDs, Furuta said. Symptoms of EoE often can be improved with diet modifications, but for people for whom that does not work, steroids may be prescribed.

Treatments differ for the other EGIDs, EC, EG and eosinophilic gastroenteritis, or EGE, but may follow a pattern of diet modification that may be coupled with steroids or other treatments.

Luckily, EGIDs are not life-threatening, but they can have a big effect on quality of life, Furuta said. But, he also pointed out that for EoE, about 75 percent of patients are able to find a dietary or medical way to control symptoms.

Lovec’s doctor in Billings and an allergist in Helena recommended she stop eating eight common allergens — dairy, soy, gluten, tree nuts, peanuts, eggs, fish and shellfish — and corn.

Since last summer, Lovec has been eating a diet consisting mostly of chicken and potatoes, along with a nutritional supplement drink free of known allergens called Neocate Splash.

“It tastes like baby formula with a tropical fruit flavor,” Michael Sullivan said.

It isn’t particularly appetizing, and a case of 27 drink boxes costs $132. The family’s insurance doesn’t cover the Neocate because it is considered food, Becky Sullivan said.

“It’s hard when food is the enemy,” Becky Sullivan said.

Every holiday, every get-together or summer barbecue centers around food. Eating at a restaurant is next to impossible. Those nine foods Lovec cannot eat sneak into the ingredients of just about everything. Fast-food french fries may contain dairy, grease that food is fried in is sometimes corn-based, for example.

Becky Sullivan commended Great Falls Public Schools for accommodating her daughter’s dietary needs at school.

“It’s a very frustrating, horrible disease that every day we hate more and more,” she said.

Lovec will travel with her family to see a team of interdisciplinary specialists at the National Jewish Hospital in Denver, maybe as soon as this month, to receive a treatment plan for her conditions. The family remains optimistic.

“It can’t get any worse,” Becky Sullivan said jokingly.

The Sullivans are planning to sell their house and move into a smaller apartment, with proceeds from the sale going to pay off some student debt so they can focus on treating Lovec’s condition.

The Sullivans say they are fortunate to have insurance coverage, but they know insurance won’t cover all the costs of the treatment in Denver, let alone travel, lodging and meals.

“We don’t know what will be covered or not,” Becky Sullivan said. “We don’t know until they start billing things.”

But the family remains optimistic. And, according to Furuta, they should.

Research into EGIDs has exploded the past several years, and in 2007 the first diagnostic criteria for EGIDs was established.

Online communities of patients have proliferated, too. The American Partnership for Eosinophilic Disorders promotes awareness and research, for example. Parents and adult patients can communicate, sharing stories of their successes and frustrations with the disorders.

“For patients who are affected by these diseases there should be a lot of hope,” he said. “There’s an enormous amount of progress made in the last decade to helping care for patients.”

Furuta pointed out that many researchers regularly collaborate and share information, which isn’t always the case in scientific research. He looks forward to more advances.

“I was taking her to school one day and was feeling bad — I think I had just tasted her formula for the first time,” Becky Sullivan said. “I said, ‘I’m sorry, Miyah, that you have this.'”

Lovec, however, was unfazed.

It’s OK, she said. I’m young enough; they’ll find a cure.

– Briana Wipfl (source greatfallstribune.com)

Disease can’t keep Broomfield brothers out of the game

In the News, Uncategorized

Young football fanatics won’t be slowed down by feeding tubes

On the football field, Carson and Jake Organ tackle their opponents with youthful exuberance.

Football is a way of life for the Organ family, and they’re used to tackling life’s challenges as well as their opponents on the field. After the boys developed serious food-related allergies and needed to use feeding tubes, their mother, Chanda Organ, wasn’t sure where their lives would lead.

Jake and Carson, however, are thriving while playing football, a sport that has empowered them to stay healthy as they receive support from coaches and the Broomfield Youth Football Association.

Sports have been a positive influence in Jake and Carson’s lives, especially with the support of coaches and accepting players, Chanda Organ said. The Organs want to spread some inspiration to other “tubies” through their Facebook page, which follows their active lifestyles while they use feeding tubes to manage a chronic disease called Eosinophilic Esophagitis, or EoE.

“Don’t be afraid to just try it,” said Carson, 10, who has been playing football for four years in BYFA flag and tackle programs. “If you don’t like it, you can try a different sport. … I have a feeding tube and I’ve played lots of sports and it hasn’t hurt me to play with my tube.”

The boys have an inability to eat most foods because the esophagus becomes inflamed, which can cause problems with swallowing, nausea and vomiting and other digestive problems, according to the American Partnership for Eosinophilic Disorders, a nonprofit advocacy group.

Though EoE can be serious, sports have helped Jake and Carson feel more normal and stay active. After the go-ahead from their doctor, they’ve enthusiastically jumped into the sport, Chanda Organ said.

Jake, 12, said he started playing football to be like his dad, who also played. Before each practice or game, he wraps his stomach with an ACE bandage to keep his feeding tube from getting snagged, but said there are no other special preparations he has to make.

Jake has been playing for eight years, and said he had one bad season where he missed practices because of doctor’s appointments and spent an important game in the hospital.

Since then, though, he said it has been easy to keep going back to the football field with his game face on, he said.

“Don’t let EoE hold you back,” he said. “Just do what you want and don’t hold back.”

Coaches with BYFA have made it possible for the boys to stay in the game, supporting them when they don’t feel well and making sure they’re truly part of the team, Chanda Organ said.

“They’ve never been told they can’t play, and (the team) doesn’t discriminate,” Organ said on a chilly Saturday morning, watching from the sidelines of Carson’s football game at Broomfield County Commons. At halftime, she walked to another field to watch the second half of Jake’s game.

Both boys use Mic-Keys, a type of “low profile” gastrostomy feeding tube meant to be less cumbersome and work for people who want to lead active lifestyles, according to Kimberly-Clark, maker of the Mic-Key.

The Organ family has a Facebook group, Mic-Keys On the Go, which posts photos of the kids playing football, inspirational quotes and even how-to posts about how to change tubes.

In the early days of her children’s illness, Organ said the Internet was vital to finding out the ins and outs of how best to handle EoE and feeding tubes. Now, they want to contribute to the conversation with tips and some inspiration of their own.

“When we started, nobody really tells you anything, but I want other parents to know it’s OK,” she said. “Football has taken them out of the pity party. Here, they’re normal.”

– Megan Quinn (source: broomfieldenterprise.com)

Rare Blood Disorder Can’t Stop Patnaude

In the News, Uncategorized

Chris Patnaude’s socks are pink. The laces of his football cleats are pink, the band on his left elbow is pink, and the Under Armor sleeve on his right arm also is pink.

If you examined his white blood cells beneath a microscope, you would also see a fair amount of pink. It’s the color that eosiniphils, the rarest type of white blood cell, turn when stained with laboratory dye. In most people’s bodies, eosiniphils makes up no more than four per cent of all white blood cells, and helps fight infections. But for Chris, 14, who is in eighth grade at the Edgartown School, the eosiniphils are rampant and, as his mother Tanya explained: “They fight against him.”

When Chris was nine years old, he was diagnosed with hypereosinophilic sydrome (HES), a rare disorder that, according to the National Institute of Health, is most prevalent among those aged 20-50. The eosiniphils in his blood had multiplied and spread to other tissues in his body, causing a diagnosis of congestive heart failure when he was just eight. He suffered from stomach pains and headaches and inflammation in his limbs to the point where, for a time, he could not walk.

Chris spent a year of his life in a wheelchair, shuttling back and forth from his Plymouth home (the Patnaudes moved to the Vineyard six years ago) to Boston Children’s Hospital as doctors sought a diagnosis. Between the crippling pain in his body and frequent trips to the hospital, he attended just 12 days of school in his third grade year. HES is diagnosed via exclusion, so a number of other disorders had to be ruled out before a final verdict.

“To not know for that year, I think, was hard on all of us,” Mrs. Patnaude said. Chris has five siblings, and the stress of the unknown disease was challenging for the entire family.

“I would just keep going to doctors, and they would say, we don’t know what this is yet,” Chris said. “I just kept wondering what’s wrong with me, am I going to walk again, play sports?” A lifelong athlete, Chris started playing T-ball as soon as he was old enough, and branched into other sports not long after. He currently plays football, lacrosse and basketball. An inhaler and EpiPen are always nearby, in case he has a flareup during practice. The diagnosis, though it finally put a name to the culprit, did not mean an end to the symptoms; HES is a chronic disease.

These days sports are more than an outlet for restless energy and a chance to be with friends — they’re a way for Chris to manage HES.

“It helps him stay loose and stay in control,” said Chris’s father Dennis Patnaude. “If he stops, what happens is he becomes tight . . . the swelling and the inflammation will all come back.” Even in Chris’s classroom at school, Mr. Patnaude said, teachers know that Chris may get up and walk around the halls if he starts to feel tight.

“He’ll push himself through the pain just because he knows that pushing himself will help with the pain later,” Mr. Patnaude said.

Not that any of this was evident during junior high football practice on a recent Wednesday evening. Chris, who has captained the team for two years, cuts through coverage with ease during offense drills, and works on tackling and blocking with his 37 teammates. He wears number 33, the same number his grandfather wore in high school football. When little brother Zach started playing football in the youth league this year, he picked 33, just like his brother.

On most teams, the kid in the pink socks would be easy to pick out, but on the junior high team about a third of the players are also clad in the color. Laces, socks, sleeves, armbands.

“We already told them don’t wear your [pink] socks to practice, you’ll get them dirty,” junior high coach Steve Quinn said. “But they’re wearing them anyway.”

Tomorrow before the junior high team plays its first home match of the season against Boston College High, Chris will speak about his disease and how he manages it. A few weeks ago, he explained at practice “I was kind of just ready to bring up awareness.” The talk is now part of a broader initiative by the American Partnership for Eosinophilic Disorders to raise awareness about HES. The team coaches and cheerleaders will wear pink, and those in the stands are encouraged to as well.

“People have no idea [this exists,]” Mrs. Patnaude said. “That’s why he wants this out there — the faster you get diagnosed, the faster you can get on with your life.”

“I can finally do sports,” Chris said. “So I just decided to share my story with other kids so that they know that if they have this thing, their life isn’t over.”

“I forget he has a disease,” teammate Tristan Scheller said.

“You can’t tell at first,” said Nick Andrade, who also plays lacrosse with Chris. “I’d say he works as hard or harder than everyone else.”

“He motivates us,” said John Goncalves. “He just keeps going, he never stops.”

Steve Quinn said that in more than 20 years of coaching, he had never had a seventh-grade captain.

“He came up and right off the bat he stood out,” Mr. Quinn said. “He was working hard, and everything was max effort all the time.” When the coaches met to choose a captain for the season, there was a familiar refrain: “Patnaude — but he’s a seventh-grader.”

“If he’s the best guy for the job, put him there,” Mr. Quinn said. “So we did.” Since then, he said, Chris has set the tone for the rest of the team. Like any young player, he makes mistakes often, but Mr. Quinn said he learns from them.

“I give him something to do that he can’t do, and he comes back two, three days later, and I say that looks pretty good,” Mr. Quinn said. “He says ‘I’ve been practicing’ . . . he’s that kid.”

“We’re definitely a strong team, stronger than we were last year,” Nick Andrade said. “You can see it on the field.” In the past several months, they all participated in Relay For Life (Chris donned an outfit made of duct tape and sang karaoke with his teammates) and did a fundraiser 5K race. Movie nights are frequent.

“It’s the closest-knit group of kids I’ve ever had,” Mr. Quinn said.

The junior high squad is 1-1 this year, with five games left to play.

“Last year we kind of gave up a little [during games], but this year we just keep pushing and pushing,” Chris said. He takes his responsibilities as captain seriously, hoping to instill in everyone the spirit of resilience.

“Even though we might lose this game, it’s still not over and we can learn from that.”

– Ivy Ashe (source: vineyardgazette.com)

Larchmont Family Visits DC to Discuss Rare Disease with Legislators

Advocacy, In the News, Research

Bonnie Weinbach and her son Aaron traveled from their home in Larchmont last week to the nation’s capital to meet with legislators including Rep. Nita Lowey (D-NY), and the staff of Sen. Chuck Schumer (D-NY), Sen. Kirsten Gillibrand, and Rep. Eliot Engel (D-NY).

Aaron Weinbach, 8, suffered for several years before being diagnosed with eosinophilic esophagitis (EoE), a disease that affects his esophagus (the tube connecting the mouth to the stomach). As a result, Aaron’s ability to eat is impacted.

Weinbach and several families living with eosinophil associated diseases got together for “Capitol Hill Day” during National Eosinophil Awareness Week according to a release from American Partnership for Eosinophilic Disorders. With a mission of educating legislators about the diseases and press for federal funding for research,

Eosinophil associated diseases are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places in the digestive system, tissues and/or organs, which causes inflammation and damage.

Eosinophil associated diseases, particularly EoE, are rapidly emerging as a healthcare problem worldwide. All too often patients aren’t given an accurate diagnosis for years, or are misdiagnosed, due to the lack of information or awareness of these diseases.

Diagnosis can be made only through tissue biopsies, an invasive procedure that requires anesthesia.These diseases are chronic and often debilitating. Currently, there is no FDA-approved therapy for most eosinophil associated diseases and there is no cure.

Weinbach has hope that the meetings will lead to changes for her son and others living with eosinophil associated diseases. “I hope to see federal funding for research into better treatments, less invasive testing to diagnose and monitor these diseases and hopefully, one day, a cure,” she said.

– Leslie Yager (source: patch.com)