helping joshua
Family comes to Barrow Epilepsy Center
for unusual treatment of child's difficult-to-control seizures

Amy Thursam sits beside her son, Joshua, in his room in the Pediatric Unit at St. Joseph’s Children’s Health Center. She and her husband, Jeff, remain hopeful for their youngest child—and determined to do whatever it takes to wrestle him from the seizures that are coming far too
often on this January day.

“He’s having a seizure right now,” says Jeff. “See how his arm comes up, his head turns to one side, he sticks his tongue out and just stares? I can
tell he’s just not here right now.”

Amy hugs Joshua tightly. “It’s okay, Buddy. We’re trying to make you all better,” she says.

Just three months ago, the future looked brighter for the three-year- old Goodyear child. For a year, his seizures came much less frequently than they had before. Amy and Jeff can even remember a day in October 2005 when Joshua had not one seizure. But gradually, the medication that was such a godsend stopped working, and the seizures returned with a vengeance.

“In November, he turned into a pile of mush,” Amy says. “You should see the photos we took at Christmas. The Christmas before he was so
alert — he looked right at the camera. This year, he was just mush.”

Joshua’s seizures began shortly after birth. Jack Kerrigan, MD, a pediatric epilepsy specialist, says that Joshua was born with clotting problems, likely caused by the inutero death of his twin brother. When Joshua was born, both arms were dark from blood clots that were impeding blood flow into his arms. Doctors were able to remove the clots and restore normal blood flow to his arms, but they were unable to prevent the strokes, also caused by clots, that damaged most of the right side of his brain and part of the left side.

“Medication controls seizures for most children.” says Dr. Kerrigan, “but about a third of the children we see have epilepsy that is hard, if not
impossible, to control with medication alone. That’s when we turn to other treatments that have proven successful for some children—a special diet, surgery or vagus-nerve stimulation.”

Joshua has come to St. Joseph’s to try one of those treatments—the ketogenic diet. This unusual diet consists of high-fat, low-carbohydrate
foods, including cream, butter, cheese and mayonnaise.

“There is now a commercially available formula for younger patients that has the same high-fat, low-carb balance as the ketogenic diet,” Dr. Kerrigan says. “That is what we are using for Joshua.”

Drs. Kevin Chapman and Jack Kerrigan

Amy tries to remain hopeful but already she is concerned. She has heard of children whose seizures stopped soon after beginning the ketogenic diet. Joshua is still having up to 20 seizures a day.

“If this doesn’t work, we’re looking at a possible hemispherectomy,” she says, adding that Dr. Kerrigan has told them Joshua is not an ideal candidate for the surgery— which involves removing the side of the brain where the seizures originate— because in his case, both sides are damaged.

Still, there is much to be thankful for, the Thursams say—the thoughts and prayers that have poured in, a swimming pool for Joshua’s therapy constructed free of charge by White Water Pools, and two older children who care deeply about their little brother.

Five-year-old Emily recently learned about Martin Luther King in her kindergarten class. When her teacher asked the class if they had any hopes and dreams, Emily was quick to respond. “She said her dream is to have her brother walk with her someday,” says Amy.

As for Jeff and Amy, they just want to help Joshua emerge from the prison in which he is trapped. During that year that now seems so far away, “he interacted with us, he interacted with the kids,” Amy says. “You know he’s in there. He’s just stuck.”

Editor’s note: Barrow Neurological Foundation funds numerous research projects designed to increase our understanding of epilepsy and to develop new treatments for the disease. If you would like to support our efforts to help children like Joshua, please contact the Foundation at 602-406-3041 or send your contribution in the envelope included with this magazine. ■

Barrow’s Epilepsy Center The Epilepsy Center at Barrow offers comprehensive diagnosis and treatment for children and adults with seizure disorders. The Center features: The first and most active epilepsy monitoring unit (EMU) in the Southwest. The EMU in the new Barrow Neuroscience Tower has 15 beds, twice the capacity of the old unit, and is equipped with the latest brain monitoring equipment. Four full-time pediatric and five full-time adult epilepsy specialists. A full range of diagnostic tests. A large and active research program investigating the causes of seizures and developing new treatments. To learn more about the Barrow Epilepsy Center, call 1-800-BARROW-1 (1-800-227-7691).