Las Vegas teen saw 27 doctors before being diagnosed with PANDAS

At 14, southwest resident Diego Gonzalez is living a life he could barely imagine a year ago. He is a disc jockey and a producer, appearing in front of crowds numbering in the thousands.

His next big event is the UltraViolet World Festival with rapper Lil Jon, set for Nov. 15 in Dallas.

What’s it like to be doing something he loves?

“It’s a rush,” he said. “When you’re all done, you feel like you just ran 100 miles.”

Since learning to use DJ equipment provided by the Make-A-Wish Foundation of Southern Nevada, Gonzalez has had several local appearances, including the 98.5 KLUC radio show with DJ CO1 on Labor Day weekend, the Make-A-Wish 5K at Town Square Las Vegas and the Adult Pool Day Party at the Flamingo.

He also traveled to Phoenix twice to appear at the Blacklight Run 5K and speak at the Make-A-Wish World Conference.

His accomplishments are all the more impressive considering he has a condition that left him barely functioning.

It started early in his life. His mother, Tina Gonzalez, held him back from kindergarten due to immaturity. By fourth and fifth grade, he exhibited severe anxiety and would hide in the school bathroom. Back in the classroom, he would complain of an inability to breathe. Paramedics had to be called.

“It happened 67 times in fifth grade, and an ambulance had to take him from school to the hospital,” she said. “We treated it as asthma. Whenever he would fall to the ground, when he couldn’t breathe, we’d give him his inhaler, and it’d bring him back.”

He was misdiagnosed time after time — attention deficit disorder (ADD), Tourette syndrome and autism. A vaccine needed for junior high led to more symptoms and heightened sensitivity to light and sound. In 15 months, he saw 27 different doctors.

Finally, in July 2013, the diagnosis came in: pediatric autoimmune neuropsychiatric disorder associated with streptococcus infections (PANDAS). His tonsils were removed, which was where most of the strep was concentrated.

“The normal range for childhood strep antibodies is 0 to 150,” Tina said. “He was 890.”

According to the National Institute of Mental Health, there are no lab tests that can diagnose PANDAS. Instead clinicians use five criteria: the presence of obsessive-compulsive disorder and/or a tic disorder; pediatric onset of symptoms (age 3 years to puberty); episodic course of symptom severity; association with Group A beta-hemolytic streptococcal infection (a positive throat culture for strep or history of scarlet fever); and association with neurological abnormalities, including rapid, jerking, involuntary movements.

Kari K., who asked that her last name not be used, is a mother in Arizona whose 12-year-old son has PANDAS. She coordinates a support group there, pandasnetwork.org. ​She knows how tough it is to get a diagnosis.

“The sadness of this is that we’ve all got these stories,” she said. “We saw 22 doctors in four states. … It’s frustrating to watch your child suffer and have doctors who just shrug their shoulders.”

Dr. Roshan Raja, a pediatric neurologist in Las Vegas, said diagnosing PANDAS is a process of elimination.

“First, you look through the more common things, and we try to find what could unify all his symptoms,” Raja said. “Then, after those workups come back negative, you look for more rare things. … I actually have to credit (Tina) for doing her own research and bringing it to the attention of (Diego’s) doctors.”

Since going on medication and getting antibody infusions, Diego’s health has turned around. After the Make-A-Wish Foundation granted his wish in February, his life’s path has completely changed.

The DJ equipment “gave me something to look forward to each day,” he said. “This is something I can do for the rest of my life that I love.”

He said he had only a fuzzy memory of the past two years, knowing only that something was off. He previously attended Faiss Middle School, 9525 W. Maule Ave., but is now home-schooled.

“I remember having really bad tics every night and being sore every night,” he said. “(With medication), there’s a big improvement. I can go outside, be with friends.”

Contact Summerlin Area View reporter Jan Hogan at jhogan@viewnews.com or 702-387-2949.