NCAA Tournament 2019 – UMBC Retrievers coach Ryan Odom shares his son’s battle with PANDAS

IT SEEMED so unremarkable at first, something only a mother would notice.

Instead of running to the sink like most middle schoolers and washing his hands as fast as he could, 13-year-old Connor Odom would wash, rewash and then wash his hands again. His mother, Lucia Odom, thought it was odd, but didn’t really worry until, over time, she saw his hands — red, chaffed and nearly raw up to his wrists.

Then, it was the showers. Ten minutes turned into 20. Twenty minutes turned into an hour. An hour became three hours. Connor wouldn’t, couldn’t, get out of the shower even though the hot water would always run out.

“It was almost like he had these glazed-over eyes, like he was present but not present,” Lucia remembered. “I knew it wasn’t normal.”

Lucia knew what it was like to live an unconventional life. The wife of a collegiate basketball coach, she often fought through the routine, day-to-day battles of family life on her own, while her husband, Ryan Odom, fought to keep his latest coaching position. After UNC-Charlotte’s head coach fell ill in the middle of the season, Ryan suddenly found himself thrust into the position of interim head coach. His job, and that of his entire staff, was on the line.

Faced with that burden, Lucia decided to keep her son’s struggles a secret from her husband. She wouldn’t tell him she was worried that something was very wrong with their son.

FOR THE ODOMS, basketball is family, and the family is all about basketball.

Ryan’s father, Dave Odom, spent 25 years coaching in the ACC, including a stint in the 1980s as an assistant coach at the University of Virginia. Ryan was a ball boy in those days and would sit behind the visitors bench so he could listen to North Carolina coach Dean Smith, Maryland’s Lefty Driesell and Duke’s Mike Krzyzewski lead their teams. After Ryan graduated from Division III Hampden-Sydney College in 1996, where his 3-point field goal record still stands, he joined the family business and started coaching.

Ryan moved every other season over the first decade of his career, taking assistant coaching jobs all along the East Coast. At the same time, he and Lucia started a family. Connor arrived first, followed by Owen two years later.

As the boys grew up, it was not uncommon to see them playing pickup games in the family’s backyard. For Connor, in particular, basketball was something he could always count on — the calming rhythm of bouncing the ball and taking the shot as he practiced his 3-point shot.

By 2015, when Connor was 13, Lucia was having trouble getting him to school because he was terrified of germs. He wouldn’t let anyone come into their house. He wouldn’t even let Lucia touch him.

“He didn’t like people being close to him, talking to him, thinking he would get contaminated,” Lucia said. “It morphed into germs that weren’t real.”

Lucia had come to the hard conclusion that her son had a serious mental illness.

“You know your child and you know something isn’t right and you go to the doctor and you try to tell them this isn’t right and they don’t hear you,” she said. “It’d be like someone telling Ryan how to coach a basketball team when they’re not a basketball coach. People don’t like to be questioned when it’s their profession.”

After going only 8-11 at the end of the 2015 season, Ryan and the entire UNC-Charlotte staff were let go.

“Probably the worst point in our life,” Lucia said. “But it turned into a blessing because that, in turn, brought Ryan home.”

Ryan knew Connor had been behaving oddly but didn’t appreciate the severity of the situation.

“I’ve never had adversity like this,” Ryan said. “To see your son struggling like he was and not be able to have the expertise or the ability to help — it was a big mystery.”

Connor said his rational brain knew the germs weren’t real and wouldn’t make him sick; but at the same time, he would still feel compelled to start washing all over again if he didn’t wash them off in a certain way.

“So, I just kept giving in to the temptation to wash,” he said. “And it made it worse.”

Through audio and video recordings, Lucia documented how difficult it was for Connor to stop washing his hands or get out of the shower. In one audio clip, they have an exchange as she tries to get him out of the shower.

“I just want to go to school,” Connor said.

Lucia replies: “Then we need to go.”

Connor whimpers: “I can’t! It’s like I’m in jail. Like my mind is shackled and I don’t have the key to get the shackles off!”

Connor said he could not think clearly: “My mind was blurry.”

“It’s like I’m being tortured!” Connor cries in another recording.

“I don’t want to disappoint anyone,” Connor tells his mother when she urges him to get out of the shower. “But I just can’t!”

“You know your child and you know something isn’t right, and you go to the doctor and you try to tell them this isn’t right and they don’t hear you.”

Lucia Odom

Only basketball could lure Connor outside.

“That was the one thing, ironically, Connor could do,” Ryan said. “He couldn’t go to school, he couldn’t do anything, but he could play basketball. We could talk him out of the shower and get him out of there to go play basketball.”

But then came Connor’s AAU tournament. “We were at nationals,” Connor recalled. “I had a game and I was in the shower for three hours.”

“He just couldn’t get out of the shower,” Ryan said. “We couldn’t get him to the game.”

Connor had brain scans; he met with psychiatrists, psychologists and therapists. Nothing worked.

“It was the hardest thing I think I’ve ever dealt with in my life, knowing I couldn’t fix my son,” Lucia said.

By that summer of 2015, doctors diagnosed Connor with severe Obsessive-Compulsive Disorder (OCD), which causes someone to repeat behaviors because of uncontrollable, reoccurring thoughts. Connor was terrified of germs. He couldn’t stop thinking about them.

“It’s like a washing machine,” Ryan said. “That’s all they can think about. It just goes over and over and over again. And what happened with Connor is he began to develop rituals,” like washing his hands, “to deal with those thoughts.”

None of the doctors they met with could explain why the OCD had set in or how to stop it.

Desperate to find answers, Lucia went to her local library to search for books about OCD.

“‘Saving Sammy’ was the only book they had, so I got it, went home and read it,” she said. “Within the first five pages I just said, ‘Oh my gosh, this is what’s wrong with Connor!'”

In the book, Sammy’s mother, Beth Alison Maloney, learns her son’s OCD was caused by a previously undiagnosed strep infection. The Odoms decided to have Connor tested for strep and his numbers were through the roof, even though he didn’t have a sore throat or other classic symptoms of strep.

Connor then was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus or what is commonly referred to as PANDAS. He began antibiotic treatment to kill the strep and moved to Nashville, Tennessee, with Lucia for intensive OCD therapy at Rogers Behavioral Health. Ryan moved into a small apartment in Hickory, North Carolina, after taking a job as head coach at Lenoir-Rhyne University, a small Division II school. Ryan’s parents, Dave and Lynn, along with Lucia’s mother, moved in with 12-year-old Owen so he could stay at his school in Charlotte.

It was the hardest year of their lives.

A new opportunity

LOCATED IN THE SUBURBS of Catonsville, Maryland, the University of Maryland-Baltimore County wasn’t nearly as big or famous as its sister school 30 minutes down the road. The University of Maryland Terrapins won a national championship in 2002, and they regularly rank within the top 25. In comparison, the UMBC Retrievers had only one NCAA tournament appearance (2008) and had since endured a losing record every season.

When UMBC called Ryan to take over its men’s basketball job in the spring of 2016, he told his family he might not get another chance at a Division I head-coaching job again.

“I didn’t know what UMBC was, like a lot of other people didn’t,” Lucia said. “I didn’t know what to think. They’re not known for their basketball, but I’ve always had confidence in Ryan. He just needed a chance.”

So, just months after the family finally reunited in Charlotte, everyone packed up and moved to Maryland. Connor and Owen started at a new school, and they built a small basketball court in the backyard. Ryan quickly turned his new team around, helping the Retrievers win 21 games, three-times as much as their previous season.

But just as Ryan began his second season with UMBC, Connor’s issues resurfaced in October 2017.

“The showers just progressively went from five minutes to 10 minutes to 15 minutes,” Connor said. “I was so embarrassed. I didn’t want to tell my parents I was getting sick again until, finally, they could just tell.”

His doctors were perplexed. The strep was gone, so why had the OCD returned?

As Connor and Lucia headed back to Nashville for another round of intensive therapy, Ryan made the decision to tell his players about his family’s troubles.

“I didn’t want to hide that from them,” Ryan said. “They need to see their coach be torn up a little bit about what’s happening. No different than I need to understand that they’re going to go through some things and I’m going to have to help them when they’re at their worst.”

The team rallied behind its coach.

“We were there for him,” UMBC guard Jairus Lyles said. “The fact we were good and we were winning games, that kind of took the stress off too.”

The Retrievers were not only winning. They went on to clinch the 2018 America East Conference championship. They were headed to the NCAA tournament.

History on the court, and answers off of it

UMBC FORWARD GUARD Joe Sherburne vividly remembers Ryan’s locker room ahead of the Retrievers’ first-round game in Charlotte on March 16, 2018. UMBC, the 16-seed, was about to face off against the top-seeded Virginia Cavaliers, a team many experts predicted would win the whole tournament.

“He was talking about what he had been through, why he wanted us to win so much,” Sherburne said. “That he had been living in Charlotte right down the street [from the arena]. Out of a job. What he had been through with his family.”

Ryan was about to face his favorite childhood team in the same town on the same home court he had been fired from on the exact same day three years earlier.

“You couldn’t write the script,” Ryan’s father said of the matchup. “You couldn’t write that as a movie.”

And sitting in the stands was 16-year-old Connor, who had just returned from two months of therapy. As Sherburne listened to his coach, he remembers thinking, “We really wanted to win for him. That was a big motivation for us.”

By halftime, the game was tied at 21. But when the Retrievers returned to the court, they began firing off an unstoppable barrage of 3-point shots. Virginia, renowned for its vaunted defense, couldn’t shut it down.

“We’re a team that gets up and down and shoots 3s,” Sherburne said. “When you’re a small team who’s playing a No. 1 team in the country, you’ve got to be able to make 3s.”

UMBC went on to win 74-54, the first time in tournament history that a 16-seed ousted a No. 1 seed.

But the Cinderella story lasted just one round, on and off the court. UMBC lost its next game against Kansas State, and Connor spiraled again a few days later.

The Odoms resumed their search for a physician who could explain why the OCD kept returning and finally found veteran neurologist Dr. Rosario Trifiletti, who suspected strep might not be the only culprit behind Connor’s condition and ordered more extensive blood work.

“It’s as if you caught a mental illness,” Trifiletti said. “Most children react to infections like a strep throat by getting a fever and feeling ill. But a small percentage of kids react differently and have a sudden behavioral change and develop these characteristics of OCD.”

Trifiletti added that PANDAS is still an emerging diagnosis and there is debate within the medical community about its cause and how to treat it. But Trifiletti believes any infection that can spike a fever can cause PANDAS in a child who is susceptible to it, which is why some doctors are now starting to refer to it simply as PANS, which is short for Pediatric Acute-onset Neuropsychiatric Syndrome.

“In Connor, indeed, we found lots of things going on, and we realized there were a lot of infections to treat,” Trifiletti said.

One of the factors was Lyme disease, which the Odoms believe has been in Connor’s system since he was 18 months old.

“He woke up one morning and half his face wasn’t moving,” Lucia said. “We went to a specialist to try and figure out what it was and they said Bell’s palsy. We treated him for 30 days with a steroid and it went away.”

But it hadn’t, really. His parents believe the Lyme disease had been lurking in Connor’s bloodstream for more than a decade, triggering his OCD along with the strep when he hit puberty.

“This is why nothing worked,” Lucia said. Trifiletti “figured out the missing piece.”

“Finally, I have an answer,” Connor said of his diagnosis. “I know that my worries are caused, ironically, from germs, but at least I know that I’m not crazy and worrying about nothing.”

Connor said the hard reality of OCD is that once it sets in, it can be very difficult to control. Even though he quickly started an aggressive regimen of medication and supplements to fight the Lyme disease, the Odoms just assumed they were headed to Nashville again.

Except, this time, “Connor fought it on his own,” Ryan said. “That’s the first time I’ve seen him do that. I was so proud of him.”

For Ryan, leading his UMBC team to that historic upset a year ago was nothing compared to Connor’s battle with OCD.

“Without a doubt. What we did at UMBC is an upset for the ages — for now, until somebody else does it. There are always upsets,” Ryan said. “When you see your child overcome something this traumatic and this hard, it takes a special person to do that.”

After missing two years of school, Connor is now taking accelerated classes at Oak Hill Academy, a legendary basketball boarding school located in the mountains of southern Virginia where former alums include Jerry Stackhouse, Carmelo Anthony and Rajon Rondo.

Several of Connor’s teammates are at least a foot taller than him, including his roommate, whose side of the room looks as perfectly disheveled as one would expect from a 17-year-old. Connor’s side, however, is immaculate. Connor might never shake the need to keep everything clean and organized, Trifiletti said; he might have future relapses. But the fact that Connor can now walk into the boy’s locker room barefoot and pick through a mound of dirty laundry in search of his shoes, the doctor said, “is incredible.”

When asked if Connor is at Oak Hill training up to be the next Coach Odom, his grandfather sported a knowing grin.

“There were some really dark days, but there is great balance in life,” he replied. “And basketball was the Odom family’s anchor. It has kept us afloat.”

Reporter Tisha Thompson and producer Arty Berko work for ESPN’s Enterprise and Investigative units.

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