Adler suffers from a condition called hydrocephalus, a condition where there is too much liquid in the brain, and he has a tumor in his spinal column just below the neck. He’s been in constant pain since September and it’s gotten worse.
"He has sharp, shooting pains in his buttocks,” Carris said. “When he’s in extreme pain, he cannot sit down.”
Despite the pain, Adler (also called “Adler Bear”) remains really positive. He knows what’s going on with him, and Carris says that sometimes he gets frustrated with his pain. But mostly, he’s a happy kid who loves superheroes and comic books. He just wants to feel better.
Feeling better has been a long time coming for Adler. In February, he was diagnosed with a condition called arachnoditis. The rare disease is normally found in adults, and finding a doctor who would help manage his pain was difficult.
Carris called hospitals across the country as his pain got worse. Her husband, Aaron, used all of his paid time off from his job at the Elkhart Street Department, and she began working less and less at her job at Tiedemann Wines to take Adler to doctors and emergency rooms.
That diagnosis made her feel “completely and utterly helpless most of the time,” Carris said.
After Adler began experiencing severe headaches to the point that he was fainting, Dr. Hseih at Granger Family Medicine told the family that he needed to get to a children’s hospital.
The Carrises sought answers at Lurie Children's Hospital in downtown Chicago. They took Adler to the ER at Lurie on Friday, May 16, and he was admitted by the evening.
Hours later, doctors said that he didn’t have arachnoditis. Instead, he was diagnosed with hydrocephalus and they found the tumor in his spinal cord. Adler underwent surgery on Saturday to place a permanent shunt in his brain that drains the liquid into his abdomen.
"It was shocking at first,” Carris said. “We almost fought them on it. But they were right.”
The correct diagnosis and the surgery changed everything for her son. Adler was able to walk on his own without any dizziness Monday, May 19, for the first time in more than three weeks. His headaches are completely gone, and he’s no longer relying on morphine to manage his pain, she said.
"It’s shocking,” she said Wednesday. “The fact that he’s gone almost 12 hours between doses of Motrin, that hasn’t happened in eight months.”
Adler will be able to attend school, rather than being homeschooled. He’ll have to avoid contact sports, but he’ll likely be able to live a normal life.
The medical journey isn’t over quite yet. Adler may be released from the hospital soon, but he’ll return to have the tumor removed.
He also has a team of endocrinologists on his case to help him safely get off the steroids he’s been on since he was misdiagnosed in February, which Carris says should get rid of the pudginess in his face and belly. That will take up to a year.
And while his pain in his buttocks has improved, it hasn’t gone away. They’re still looking for a cause, but Carris feels positive.
"We’re thrilled. To see the improvements that we’ve seen in him is amazing,” she said. “It’s a miracle. I think we’ve all kind of felt that.”