Youthful victim of rare disease looks to spread word about PANS
Thomas James “TJ” Kyle, 13, an eighth grader at Gorton, says he feels like a whole new man.
After suffering seizures, intense bouts of anxiety, loss of appetite, hallucinations, tics, and signs of obsessive-compulsive disorder (OCD) and attention deficit disorder (ADD) for nearly three years, a New Jersey specialist recently diagnosed him with PANS, short for pediatric acute-onset neuropsychiatric syndrome, a proposed neuropsychiatric condition still under research. According to TJ and his mother Jeanne Muto Kyle, the syndrome is associated with all the symptoms TJ experiences.
“It’s not well known at all, so it’s important to let people know about it,” TJ said. “I had no clue what was going on with me.”
For TJ, not knowing was the scariest part. He described PANS, formerly known as PANDAS, or pediatric autoimmune neuropsychiatric disorder associated with strep, as a storm in his brain. When a storm hits, he loses “electricity.”
“The electricity goes out and you need to call the power man, which is my doctor or my medicine,” he said of the antibiotic and steroids he takes to alleviate symptoms. “They fix me and I have power again. It’s a struggle, but I’m not letting it stop me.”
At times, TJ’s symptoms were so intense he didn’t leave his home for six months.
“It hit him a month after he had H1N1 and strep,” said Jeanne. “He couldn’t write anymore, he couldn’t tie his shoes, he couldn’t do mathematics. There was a complete change overnight and that’s one of the telltale signs of PANS – it happens suddenly.”
Jeanne said she noticed a drastic change in TJ in February 2010. His hand-eye coordination was off; his handwriting deteriorated; his math skills diminished; and he was experiencing memory loss.
During that time, she and her husband were going through a divorce, and as a result, she and TJ moved. Then, there were a few deaths in the family. Doctors told Jeanne that TJ was suffering from emotional trauma, coupled with a seizure disorder and an anxiety disorder.
“He couldn’t go to school because his anxiety was so severe,” said Jeanne.
That’s when TJ, then a fifth grader at Warwick Neck, began being home-schooled. While tutors noticed steady progress through the years, Jeanne said it wasn’t until late last summer that things took a significant turn for the better when a friend told her of a family member in New Jersey who was going through similar symptoms as TJ and had been diagnosed with PANDAS a few years prior.
She never heard of PANDAS, so she Googled it to learn more. At first, she found photos about panda bears and quickly learned that official information about the illness is hard to come by.
But then she followed a link to a “Today Show” segment about a book, “Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD.”
“I immediately downloaded it and stayed up all night reading and crying,” Jeanne said. “This was our story.”
The following morning, she called TJ’s neurologist and scheduled an appointment for the next day. But when she brought TJ in for tests, she said technicians were unsure what they were testing him for, as the illness is still under research.
She then contacted the specialist in New Jersey, who clinically diagnosed TJ with PANS. Blood work and other tests, said Jeanne, confirmed the diagnosis, and he was prescribed antibiotics and steroids.
“In November, he was taking 27 pills – he now takes two pills,” Jeanne said. “Within a few months of his diagnosis, TJ’s teachers, coaches [and] scout leaders said, ‘It is nice to see the old TJ’; ‘TJ has come a long way’; and ‘I am amazed at the difference I’ve seen in TJ,’ [while TJ said] ‘Mom, can I go play? Mom, can I stay longer at school?’ I felt like I had my son back.”
TJ’s tutor, Sean McElroy, began working with TJ in fifth grade during the onset of TJ’s seizure activity. By sixth grade, TJ was still being home-schooled but also began visiting school for classes each day. McElroy helped make the transition of returning to school as smooth as possible for TJ by matching him with teachers he knew would compliment TJ.
“I’ve always seen progress, but I think mid-year seventh grade I saw a significant change in TJ,” McElroy said. “He started being able to cope and had a better understanding of what was happening to his body. The anxiety subsided a little bit and he was more comfortable coming into the building.”
Jeanne said TJ has been blessed with great teachers and administrators at Gorton who made it possible for him to now attend school every day for three subjects. TJ is thrilled of his own progress and agrees that his educators deserve a pat on the back.
“He’s my man,” TJ said of McElroy. “He’s always helping me. All the teachers at Gorton have helped me.”
While TJ still endures symptoms, they aren’t as often or severe. His last major seizure was in October, but he’s had a few minor ones here and there.
“It all depends on the day,” he said. “Some days I feel like I don’t even need my medicine and other days I beg for my medicine because it gets so bad I can’t walk.”
On good days, TJ can be found enjoying his favorite activities, including playing baseball and basketball at the Oakland Beach Boys and Girls Club.
“If I didn’t hang out with my friends, I’d be a lot worse because I’ve had their support,” he said. “They help me a lot. I’m still working on it and trying to cope.”
To stay positive on bad days, he remembers that things could be worse. He knows people who deal with more severe medical issues.
“My friend’s sister has brain cancer,” TJ said. “I realize that I’m lucky.”
Instead, TJ and his mom want to raise awareness about the condition. Spreading the word is important.
“We want to let people know about it so at least it can be something they question,” Jeanne said, noting that her sister, a West Warwick High School teacher, recently mentioned PANS to a parent, whose son is now on the road to recovery.
Meanwhile, TJ is on the road that leads to high school. He will be attending Providence’s Metropolitan Regional Career and Technical Center, or The MET, next year.
“I want to work with special needs children,” he said. “I won’t let the anxiety stop me.”