Forgive Jasmine DeMatteis for wishing for an end to the holiday season and all of its focus on food — which isn’t any fun for a 4-year-old who can’t eat it.
Her youngest, Jude DeMatteis, has primarily been living off a feeding tube since he was 4 months old because he’s unable to digest proteins in food.
Until recently, doctors and other medical experts were stumped as to why. A new diagnosis has offered clarity, but life’s still difficult for the little guy, who is never far from the loving, devoted embrace of his mother and family — as well as some excellent area doctors and many others in La Cañada Flintridge who have monitored his status.
In December 2014, Jude’s condition attracted attention from local media outlets, including KTLA-TV and newspapers that reported on the “mystery illness” plaguing the toddler.
In the following months, La Cañada Presbyterian Church Parent Education volunteers and La Cañada Community Center Preschool held separate fundraisers, collecting thousands of dollars to help pay for treatment and testing that went uncovered by medical insurance.
The working theory until just a few months ago was that Jude suffered from a rare condition called Food Protein-Induced Enterocolitis Syndrome. But he didn’t seem to be outgrowing it as most children do, and he had symptoms even when he hadn’t eaten anything, Jasmine said.
Earlier this year, his immunologist at Children’s Hospital Los Angeles realized Jude’s T cell count was low and suggested he be included in genetic testing happening in Germany, a “fluke trial,” Jasmine called it.
Months later, as Jude was experiencing new bouts of swelling and severe stomach cramps, the test results came back with an even rarer diagnosis: He has Crohn’s Disease.
That’s almost unthinkable for children his age, Jasmine said. Doctors told her and her husband, Jason, that the disease affects fewer than 1% of children.
“It’s something he was tested for almost right out of the gate,” Jasmine said. “But they said infants are not symptomatic, so there’s no way he has it. All the writing was on the wall, everything said Crohn’s Disease, but the doctors said, ‘It doesn’t make sense, an infant doesn’t have Crohn’s disease.’
“But he does. He does.”
Crohn’s disease is characterized by inflammation of the gastrointestinal tract. It causes inflammation in different parts of the digestive tract and can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. The disease can be both painful and debilitating, and sometimes might lead to life-threatening complications.
There’s no known cure, but therapies can reduce its signs and symptoms and even produce long-term remission, according to the Mayo Clinic.
The diagnosis helps steer his doctors, including Pasadena-based pediatric gastroenterologist Gilberto Bultron, who blends Eastern and Western medicine in a way that Jasmine loves.
For the foreseeable future, Jude will take immunosuppressant drugs meant to stop his immune system from causing inflammation.
But that leaves Jude — who was having a good day a few weeks ago, giving high-fives and bouncing happily around the LCF backyard belonging to Joe and Nancy Abbott (Jasmine’s godmother) — vulnerable to all sorts of illnesses.
In the weeks since, Jude has battled fevers, sinus infections and pneumonia.
And his diet remains limited: Some fruits are OK, as is coconut and soy milk, Jasmine said. But gluten, wheat, eggs, dairy, meat — and Christmas cookies — are off the table.
“I’ve gotten very, very good about making alternative things, but it’s really frustrating because it tastes terrible,” Jasmine said. “You go for decent because he has no idea what the real stuff tastes like.”
When Jude was 2 and tolerating only 2 ounces of milk at a time without vomiting, doctors decided they needed to place a second tube through Jude’s intestine to offer two ports to feed him formula. But after a couple of especially rough weeks, an X-ray was conducted; it showed that the gastric tube had been dislodged and was no longer in his intestine.
Doctors said Jude needed to undergo another procedure to place a catheter into his veins to administer feedings.
Jude already had experienced long hospital stays, six procedures under anesthesia, MRIs, scopes, biopsies and a multitude of surgeries and blood draws, as well as occupational and food therapies and continuous pain from the “g-tube.” All of that affected him, Jasmine said. Her son had begun to withdraw from people. He especially was terrified, she said, of hospitals and doctors.
So instead of putting him through another surgery to insert another feeding tube, and subjecting him to the accompanying pain and risk of such a procedure, she committed to feeding him 2-3 ounces of neonatal junior formula every two to three hours through his feeding tube every day (and night).
“She’s my role model,” said pediatrician Diala Faddoul, who sees Jude at Descanso Pediatrics, and checks in on him outside the office too. “She’s doing her best and fighting her best for her child, in every way possible. Everybody loves her in the office. She gives all of herself to her children, she doesn’t sleep, she’s really a role model as a mom.”
“I say this with a smile, sleep deprivation makes you want to cry,” Jasmine said. “But it’s a labor of love, I can’t imagine putting him through something that would perhaps make him more sick because of the infections that it would leave him prone to — and traumatize him.
“It’s really ridiculous when people say, ‘Oh, thank God he won’t remember.’ This imprints on your brain. Even if you’re a newborn, there’s trauma, you remember trauma. And the older he gets, the more impossible testing has become unless it is absolutely dire. If we can avoid it, we will do everything under the sun to do so.”
Bultron and Faddoul are among the medical professionals on whom Jasmine feels fortunate to be able to depend, as is Anne Bierling, the director of the LCPC Parent Education program.
Bierling, along with other members of the group and the church, have committed to doing as much as they can to help Jude and his family.
At its 2015 LCPC Parent Education gala, donors contributed $20,000 to help cover the expense of a mitochondrial genetic test that spared Jude from another trauma-inducing surgery. They’ve also offered access to a support group, as well as babysitting, meals and a lead on a new job for Jason, who is an engineer.
“We just really feel honored that we’ve been called to come beside this amazing family that has gone through this very difficult crisis,” Bierling said. “[Jude] is the most darling, loving child. What he’s been through would be very difficult for most adults, but he’s a child who doesn’t have the cognition to even understand that there could be a benefit from going to the doctor.”
Jasmine said she’s hopeful that Jude, who will be old enough to enroll in kindergarten next school year, will be able to join his twin siblings, Jenna and Jack, at Paradise Canyon Elementary in due time.
“Everything in this community has been our support system,” said Jasmine, who lives with her family in Shadow Hills. “I truly believe, without LCPC Parent Ed, Jude would have had to go through another surgery. And God bless [Community Center Preschool], which put the Habit function together.” (The fundraiser at the Habit Burger Grill helped cover treatment from gastroenterologist experts at Cincinnati Children’s Hospital.)
“It’s been constantly like that for us here in La Cañada. I’m telling you, we wouldn’t have survived any of this without this community, if, when the chips were down, somebody didn’t say, ‘Let us do this to help you.’”
“It’s a very sad story, but also a very amazing story,” Bierling said. “We’re fortunate to be a part of it.”