Friday, January 28, 2011

Family Finds Support System in Food Allergy Center

Tadgh Murray won’t be having any cake for his 7th birthday this month. As a child with an allergy known as eosinophilic esophagitis, Tadgh (pronounced “tig,” like “tiger”), is limited to a strict diet of certain meats, vegetables and fruits.

“What we call the ‘social foods’ are not in his category,” Tadgh’s father, Denis Murray, says. Cake, ice cream and candy are among the foods that are not allowed, making Tadgh’s medical challenge a social one as well.
“Life is surrounded by food; it’s a part of our lifestyle,” says Mariann Murray, Tadgh’s mother.

Tadgh’s symptoms first presented when he was a baby with frequent vomiting. As a 2-year-old, he became a patient of MassGeneral Hospital for Children gastroenterologist Qian Yuan, MD, PhD. Dr. Yuan diagnosed Tadgh with eosinophilic esophagitis (EE), an allergic inflammation of the esophagus-- the tube that connects the mouth and stomach. For those with EE, the body’s immune system reacts by sending white blood cells (eosinophils) to the esophagus and making it difficult for food to go down.

In addition to his restricted diet, Tadgh’s treatment also involves medication and supplementary drinks, aimed at lowering the amount of white blood cells in his esophagus and giving him the proper nutrition. Tadgh’s vomiting is now controlled, but his specialists are working to rid him of any white blood cells left in his esophagus.  

Mariann Murray says her son has been fortunate not to need a feeding tube for his condition, though at one point when his diet was made entirely of supplemental drinks, known to be distasteful, he begged for a tube.

“Dr. Yuan gave him the strength and the courage to go through it” without a feeding tube, Mrs. Murray says.

“Dr. Yuan is just an amazing doctor and we would not have been able to go through this or anything without him,” she adds. “We can call him anytime, he is so supportive and such a positive person. He’s our main support system, he helps all of us, even our daughter,” Mrs. Murray says of Tadgh’s 3-year-old sister, who does not have EE, but often accompanies her brother to his appointments.

Personal Team

As a patient of the newly formed Food Allergy Center at MassGeneral Hospital for Children (MGHfC), Tadgh now has access to multiple specialists during his appointments. In addition to Dr. Yuan, Tadgh receives care from dietician Carolyn Ann Butterworth, MS, RD, RN; allergist Shuba Iyengar, MD, MPH; and psychologist Nancy Rotter, PhD.

“It’s almost like an assembly line of doctors and then it doesn’t prolong the misery of it in a sense because it’s all done in one day and their interacting with each other does help,” Denis Murray says. “They interacted with each other and talked about my son Tadgh, you can tell because they’ve known him for such a long time that there was an immediate personal interest to get him to the next step. With the hard work that they’ve done over the years he has made an unbelievable improvement from way back when to now. I can never thank enough.”

Giving Back

Tadgh chose to thank his specialists last year by putting a positive spin on a holiday that has been especially difficult for him: Halloween. Instead of collecting candy, which he could not eat, Tadgh collected donations to give to the MGHfC Food Allergy Center.

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Tadgh Murray (center), with gastroenterologist Qian Yuan, MD, PhD (left), and allergist Shuba Iyengar, MD, MPH, displays his Certificate of Appreciation for his generous contribution to the Food Allergy Center at MGHfC.

Denis Murray says he was impressed with his son’s confidence as he educated people about his condition.

“You could see an amazing buildup of confidence in his face, it was an amazing thing to watch and he did it with a full heart. It was great for him and it was good for us,” Mr. Murray says.

Tadgh presented more than $100 to the Food Allergy Center as a result. He explains: “I wanted to do it to help other children with what I have, eosinophilic esophagitis, so the doctors can find a cure. It’s been like an honor to do it, it’s really been good.”

Tadgh adds of his specialists at MGHfC: “They’ve been always with me and they’ve been always nice to me and they’ve been always trying to fix my EE.”

As the Murray family awaits the results of Tadgh’s latest endoscopy, his mother expresses admiration for her son: “He’s very strong. He’s amazing at school; it hasn’t affected his schooling at all.”

Mrs. Murray finds additional support and resources from a Facebook group run by parents of children with EE from around the country. The group organizes special activities for its members, for example, by arranging a card exchange on Halloween.

Tadgh’s parents typically leave it up to him whether he would like to attend parties and other special events where food will be a focal point. At times he prefers to sit them out, but there’s one upcoming party he’s sure to attend: his own.

To support the Food Allergy Center, visit the MassGeneral Hospital for Children donation form. In the "Designation" field, select "Other," and specify "Food Allergy Center."

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