By Maureen Gilmer, IU Health senior journalist, firstname.lastname@example.org
It was at a cross-country meet last August when Jeff and Nikki Goedeker first realized something was definitely wrong with their son, Brady.
Up until then, they explained away his fatigue, his nagging joint pain and the fact that he couldn’t sprint after the ball during baseball practice as well as he had before.
The Whiteland seventh-grader is a multi-sport athlete, so aches and pains come with the territory.
Maybe new cleats would help. Maybe a knee brace. Or a heating pad.
As a parent, it’s hard to know when to sound the alarm, Nikki said. “I didn’t know if I should be taking him to the doctor and saying, ‘My son is tired.’ We chalked it up to growth for a while.”
But that August day, during Brady’s first cross-country meet of the season, they watched as their son, previously a top runner on the team, could barely finish the race.
He wasn’t fatigued or out of breath, he said afterward.
“My legs just wouldn’t go,” he told his parents.
Jeff said his son’s time for that race was five minutes slower than it had been the previous season.
LOOKING FOR ANSWERS
They took Brady to his pediatrician, who ran some blood tests. They went to an orthopedist for a closer look at his bones. A referral to a neurologist in sports medicine was next, but they were still waiting to get an appointment.
The whole process was taking too much time. Meanwhile, Brady, who has three younger sisters, was beginning to walk awkwardly. He was having trouble climbing steps.
When Jeff and Nikki returned from a weekend trip on Sept. 20, she noticed immediately that her son didn’t look good. He told her his toes were tingling.
She took him directly to the emergency department at Riley Hospital for Children, where he was seen quickly by emergency physicians and Dr. Christopher Jackman, a Riley neurologist. He had an MRI that night, which showed nerve inflammation and was admitted. The following day he had a spinal tap.
Everything pointed to Guillain-Barre Syndrome, a rare autoimmune disorder in which a person’s own immune system attacks the nerves, causing muscle weakness and sometimes paralysis. Symptoms can last for weeks to years. While most people recover, some have permanent nerve damage.
Nikki had never heard of GBS. “It was a shock to me.”
What was surprising to the doctors was that the disorder seemed to have come on slowly, based on the symptoms Brady had experienced over the previous several months. Typically, GBS comes on quickly, often in the wake of an infection or virus.
“Brady’s presentation was interesting,” Dr. Jackman recalled. “In the short term, he had problems with leg weakness, with numbness, tingling and falling, to the point where it was very dramatic over the course of a few weeks,” he said.
“But in looking back, his parents noticed as far back as last spring that his running had started to go downhill, he was more clumsy, and he was losing weight.”
So in the back of their minds, doctors knew it could be a more chronic form of Guillain-Barre, but there is no test to prove that with any certainty. Their hope was that Brady would improve rapidly after treatment, which includes intravenous immunoglobulin (IVIG) infusions containing healthy antibodies. The 13-year-old began receiving the treatment almost immediately.
Brady remained at Riley for five days, before going home to continue his recovery, which included physical therapy. Headaches caused by a spinal fluid leak sent him back to the hospital a few days later, but then he was home again quickly.
“We assumed he would get better,” Nikki said. “But he looked weak.”
In mid-October, the family took a trip to Florida over fall break, and Brady became so weak he needed to use a wheelchair at the park they visited.
“Watching your healthy kid deteriorate, it’s been a hard few months,” Jeff said.
They took him right back to Riley when they returned, and it was at that point that doctors determined he had relapsed, which pointed to the chronic form of GBS – CIDP (chronic inflammatory demyelinating polyneuropathy).
“It was probably simmering for months,” Dr. Jackman said, based on the history Brady’s parents shared. “Either it accelerated, or he kept steadily declining to the point where he couldn’t compensate anymore. He’s a tough kid, and I imagine he stuck it out for a long time.”
His parents getting him to Riley when they did was the right move, the neurologist said. Guillain-Barre itself is rare, but the chronic form is rarer still, Dr. Jackman said, and the cause is a mystery.
“There’s not anywhere else in the state that sees this with any more frequency than Riley, and even we don’t see it a lot. We probably see one to two new cases a year at most.”
SWAPPING SPORTS FOR THERAPY
For now, Brady continues to receive infused donated antibodies via IVIG in the hope that it slowly resets the immune system so that it stops attacking his nerves. In addition, he has physical therapy at Riley’s East Washington Street clinic.
He fills the time he used to spend on the track or baseball diamond or basketball court with daily exercises, stretching and therapy to strengthen his muscles and improve mobility.
The disease mostly attacked his ankles, causing extensive nerve damage primarily in the right ankle, so he has been working with Riley physical therapist Sarah Kuklish to improve his strength and flexibility.
For Christmas, Brady received an exercise bike, and he has been using it every day, his mom said, building up his endurance until he can run again.
“His balance and strength are slowly starting to come back. He just started feeling some tingling in his right ankle, which is a sign of nerve regeneration,” she said.
Brady also received orthotics before Christmas, which help him walk a little better, Nikki said, and the most recent MRI showed less inflammation in his spine than was visible in October.
“One day at a time,” she said, “but the little signs of progress have been great.”
Meanwhile, Brady has turned his attention to a magic set he received a few years ago, brushing up on skills via YouTube.
“He has quite a few card tricks up his sleeve,” his mom laughed.
“I like fooling people,” Brady said, while undergoing one of his IVIG treatments in the Riley Outpatient Center in December.
He’s disappointed that he couldn’t try out for his school’s basketball team this winter, but his parents say he continues to display a positive attitude, and they are hopeful that he might be able to participate in track and/or baseball this year.
“He works really hard at physical therapy, and even though this could be a long, slow process of healing, we’ll get through it and he’ll get better,” Nikki said.
“He is remarkably strong,” Jeff said of his son, “much stronger than I think I would be. It’s heartbreaking as a parent because we don’t really know how long he’s been dealing with these limitations.”
They are grateful for the collaborative care Brady has received at Riley, noting that within the first 24 hours of his arrival, they had a tentative diagnosis and a game plan.
Several years ago, Brady cut his ear on a diving board, and his parents first took him to another hospital that did not specialize in pediatrics. A friend encouraged them to get him to Riley for plastic surgery.
“They blew our socks off,” Jeff said of Riley. “I was so impressed with the care he got there that time, we said if anything else happens to one of our kids, we’re going to Riley. What they are doing there is what medicine is supposed to be about – working together to find solutions to complicated problems.”
DRIVE TO GET BETTER
The plan now is to continue Brady’s IVIG infusions every two weeks, eventually spacing them out to every three or four weeks, assuming his condition doesn’t worsen, Dr. Jackman said.
As for the prognosis, it’s too soon to tell. Some patients have a complete recovery, others require occasional treatment, and still others live with a more chronic form of the disease.
But Brady has a lot going for him, starting with his family support and his mindset as an athlete, Dr. Jackman said.
“So much of rehab is just your personal resilience and your effort and drive to get better,” he said.
Brady has that in spades.
While his journey to recovery isn’t over yet, his parents agreed to share his story as a way to encourage others.
“Once you get all better, bud,” Jeff has told his son, “you’re going to have quite a story to tell. Hopefully, you can help others.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, email@example.com