Brothers battling food allergies
Having a child with food allergies can be extremely challenging
for any parent, but imagine having two children with food allergies
so severe that both must rely on enteral feeding for all of their
nourishment.
Chanda Organ and her husband face this reality daily. Their sons
Carson, age 8, and Jake, age 10, were both diagnosed with
eosinophilic esophagitis (EoE), a rare condition in which the wall
of the esophagus becomes painfully inflamed as the body's white
blood cells mistakenly attack food as if it is a parasite. Carson
was the first to be diagnosed with EoE at the age of two and five
years later his older brother, Jake, was also diagnosed after
dealing with severe episodes of stomach pain.
Carson and Jake show off their MIC-KEY*
tubes
After several rounds of allergy testing, Jake tested positive
for more than 40 food allergies. He was placed on a formula-only
diet, and his pain improved, but he was having trouble drinking the
56 ounces of formula he needed each day. In May 2008 his doctors
recommended a MIC-KEY* gastrostomy tube to help make it easier for
him ingest the formula in order to get the nutrients he needed each
day while doctors addressed his food allergies.
Carson received his MIC-KEY* g-tube in February 2011 after
doctors were unable to improve his symptoms through several
elimination diets. While Carson doesn't have as many food allergies
he does have many of the same EoE triggers as his brother, and his
doctors suspect that he is intolerant to artificial sweeteners. He
will undergo further testing, while continuing to use the MIC-KEY*
g-tube for sustenance.
Getting back onto the playing field
Though the prospect of a feeding tube was, "scary when Jake
first got it," Chanda now says taking care of the stoma site and
changing the MIC-KEY* g-tube is as routine as washing your hair and
similar to taking care of pierced ears. Since receiving the
MIC-KEY* g-tube, neither boy has had any issues. Each morning, Jake
and Carson do a feeding and pack formula to take to school.
Currently, each boy receives all of his nutrients through five
daily feedings, as well as through overnight pump feeds.
Chanda says that the MIC-KEY* g-tube and the formula have made
the process of introducing foods easier by enabling doctors to
trial foods in order to build the boys a safe diet. Today, both
boys' EoE is in remission and they're able to enjoy the same
activities as their friends. Jake plays soccer and even wraps his
MIC-KEY* g-tube with a bandage to play on his tackle football
team.
Jake in his football gear
"It was hard for him to play when he didn't feel good," said
Chanda. "But he came back and has played with the MIC-KEY* g-tube
and it has been no problem. He covers it and doesn't think twice.
He has never complained that his tube hurts and he plays
basketball, goes on the Slip 'n Slide, swims, rides bikes and rock
climbs."
Carson has also recently taken to the football field and Chanda
says it helps him to see his brother being so active. He knows that
having a MIC-KEY* g-tube won't hold him back from participating in
any activities.
Because there is no cure for EoE, controlling the symptoms
through a safe diet is the goal for both Jake and Carson. Today,
through their current treatment plans including the MIC-KEY*, both
brothers' EoE is well managed.
Jake and Carson are fighting food allergies and
EOE
