How a special needs advisor became a ‘superhero’ to a teen with Tourette syndrome
Special Needs Initiative helps create a simpler experience
Kirstin Juhl, of Phoenix, has been fighting a mysterious and aggressive enemy since her son was a child.
“Tommy was born with Tourette syndrome,” Kirstin said. “His case is exceptionally severe.”
Tourette syndrome (TS) is a neurological disorder characterized by sudden, repetitive movements and vocalizations called tics. The first symptoms are almost always noticed in childhood. Kirstin said Tommy’s tics started around age 5 and became more frequent and intense as he grew.
“It was difficult for him to eat and drink,” she said. “When he would try to drink, the liquid would fly everywhere because his whole body was jerking.”
Tommy was eventually diagnosed with a co-existing mood disorder that intensified his TS symptoms. By junior high school, full-body tics and intense head-whipping movements were leaving him with terrible headaches and soreness. He couldn’t control his hands to write or use a keyboard to learn.
The two prescription drugs approved for Tommy’s condition were not effective. Kirstin and her husband had to miss time at work to manage frequent crises. They spent tens of thousands of dollars on other medications and treatments, including painful injections, but nothing was working.
For Tommy, on top of the neurological exams and medication management, there was the physical, emotional and mental toll. He became angry and depressed.
“It was miserable,” Kirstin said. “As a mom, you just think, ‘There's got to be something that we can do.’”
That’s when Kirstin was introduced to the UnitedHealthcare Special Needs Initiative (SNI). The program provides an enhanced level of service to families of children with special needs to help them navigate the health system, connect to specialty providers and discover needed resources through advocacy support. Since its inception, the Special Needs Initiative has helped more than 100,000 families.
With SNI, families are connected to an advisor who helps them through their child’s health care journey, providing compassionate, streamlined support. For the Juhls, that person was Joy.
“Joy was my therapist, emotional support and status updater,” Kirstin said.
By the time Joy got involved, Kirstin had been advised by Tommy’s pediatric neurologist that her son’s condition might improve through deep brain stimulation (DBS) therapy, which would require surgery to implant an electrode in Tommy’s brain to alter the activity causing the tics.
“Saying ‘yes’ to elective brain surgery on your teenage son is not something you enter into lightly,” Kirstin said. “But we had to do something. Tommy’s latest tics had really crossed a line in his quality of life.”
However, Kirstin soon discovered the experimental DBS therapy was out of reach, due to cost.
“I was like, ‘What are we going to do?’” Kirstin said. “‘I don't know what to do.’”
Joy did. She and her Special Needs Initiative colleagues went to work building a case for why DBS was indeed the best course of treatment for Tommy and why it should be covered.
“I mean, they were relentless,” Kirstin said. “They handled all of the appeals processes, and not only handled it — they fought for it. It was like they were fighting for their own kid.”
Joy researched scientific literature on using deep brain stimulation therapy to treat TS, and a cross-functional team of experts dove in to help make the argument the treatment was right for Tommy — among them, Dr. Paul Monte, national medical director for complex conditions at OptumHealth.
“People didn’t give up,” Dr. Monte said. “We had multiple people fighting for this.”
When the procedure was approved in the fall of 2019, Kirstin said it was pure relief.
“I think I cried for 30 minutes,” she said.
That October, Tommy had surgery to implant the electrode. Over time, Tommy’s tics came farther apart and now, two years later, his motor tics are about 90% reduced and his mood has drastically improved.
“The whole trajectory of his life has been changed,” Kirstin said. “He's just a normal kid now, and, it never would have happened without SNI. There's no doubt in my mind. They were so caring, so supportive. They are my own personal superheroes.”
Kirstin calls the experience a true miracle and said she has seen a drastic change in her son over the years.
In fact, Tommy told her recently, "I feel like I have gotten control over my tics."
