Carson Spears was just like the other pupils in kindergarten. The bubbly little boy loved to play outside and had plenty of friends.
Then, Carson came down with his first case of strep throat.
He didn’t respond to antibiotics and his sore throat and fever worsened, said Carson’s mother, Melissa Spears.
After changing antibiotics three times over a two-week period, Carson seemed to improve.
But on Sept. 24, 2011 — his mother remembers the date — the Spears family’s only son came downstairs a changed boy.
Carson had developed an unusual and noticeable eye tic seemingly overnight.
Her son’s eyes were traveling back and forth as if to the 10 and two position on a clock over and over, said Melissa Spears, 37.
By the time she returned home from work that afternoon, she counted Carson’s eyes tics at about 80 per minute, she said.
Cory Spears said his son’s obsessive tics reminded him of an android in a science-fiction movie.
“You ask him a question and he can’t compute,” Cory Spears recalled. “That’s what I relate it to. Everything reset.”
This initial symptom of uncontrollable eye tics began the Spears’ journey into learning about Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS, a disorder resulting from an infection or environmental trigger causing abnormal activation of the immune system.
The Spears family of Mooresville has fought for the past six years to bring back Carson from this disorder that nearly robbed him of his personality.
“It’s like your kid died but they’re still there,” said Cory Spears, 39.
The Spears family hopes to educate others about PANS on Sept. 16 when they will participate in the PRAI for 100K 5K fundraiser at Marvin Ridge High School in Waxhaw.
The fundraiser is held by the Pediatric Research & Advocacy Initiative, or PRAI, a nonprofit organization whose mission is to find answers for children affected with neuroimmune disorders.
The disorders could affect as many as one in 200 children, most of whom are misdiagnosed or undiagnosed, according to PRAI statistics.
Awareness events like these fundraisers help educate people who may not have even heard of PANS and helps those diagnosed with PANS to realize there are others like them.
“The biggest thing that worries me about families with PANS kids is they think they’re alone,” said Cory Spears.
Carson’s eye tics were the first symptoms that eventually led to an unofficial diagnosis of PANDAS six years ago by his eye specialist.
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS, is a subset of PANS and is linked to a recent streptococcal infection, according to PRAI.
“We are very, very, very fortunate that we had an unofficial diagnosis within 24 hours of onset symptoms,” said Melissa Spears. “Some parents go years.”
‘It hurts worse than average’
PANS is related to other bacterial or viral infections, including strep but other co-diseases, as well, Melissa Spears said.
Antibodies in a healthy person will attack a foreign antigen like a virus or bacteria once it enters the body to prevent illness, said Melissa Spears. For a person with PANS or PANDAS, the antibodies will instead attack the person’s brain instead of the foreign antigen, she said.
The inflammation of the brain can cause symptoms including terrible headaches, obsessive compulsive disorder, anxiety, sleep disturbances and aggression in children with PANS or PANDAS, Melissa Spears said.
When Carson has a “flare,” as the Spears family calls it, he says it feels like “his brain is on fire,” Melissa Spears said.
“It sort of feels worse than other people would think it would,” said Carson, now 11. “Other people are like, they’re thinking that I’ll be OK over time but it hurts worse than average.”
After Carson’s unofficial diagnosis in 2011, the family was left on its own to discover who could treat their son.
Meanwhile, Carson’s symptoms multiplied. He became withdrawn and began having issues focusing and completing tasks. He would leave lights on all over the house and leave cabinet doors open. He developed a life-changing fear of anything that flew, including insects and birds.
Carson developed severe separation anxiety from his parents and refused to go into a room alone or sleep in his own bed.
“He didn’t leave the house one summer,” Melissa Spears said.
Over the next two years, the family took Carson to five doctors from Greensboro to Charlotte to Matthews where the Spears experienced backlash from physicians.
Doctors didn’t believe the disorder was real or thought Carson’s problems were psychiatric, said Melissa Spears.
The family spent $17,000 seeking medical answers the first year after Carson was diagnosed, Melissa Spears said.
After trying different medicines and going to local doctors “that didn’t listen to us as parents,” Melissa Spears turned to Dr. Rosario Trifiletti, a New Jersey neurologist who, at the time, was one of the few in the world who specialized in PANS/PANDAS cases.
During a phone appointment, Trifiletti listened to the Spears’ story and ordered lab work for all the family members, including Carson’s younger sister, Braxtynn.
Lab technicians took 17 vials of blood from Carson, then just 7 years old.
Trifiletti officially diagnosed Carson with PANS, not PANDAS, due to the active co-infections found in his blood work: mycoplasma, the bacteria that causes pneumonia; coxsackie — the virus causing Hand, Foot and Mouth disease; streptococcus, the bacteria causing strep throat; bartonella and babesia — a bacteria and parasite related to Lyme disease; and yeast, Melissa Spears said.
Instead of attacking these infections, Carson’s antibodies were instead going after his brain.
Carson began taking antibiotics daily for two years, as well as Tylenol and Ibuprofen, but his symptoms, although better, persisted. His parents began worrying how the treatment was affecting his already fragile body.
They decided something new had to be done.
‘Changed our lives’
At a crossroad, Melissa and Cory Spears could either commit to a $25,000 intravenous immunoglobin treatment commonly used for cancer patients to reset their immune systems or try integrative medicine and homeopathy.
The family found Dr. Angelica Lemke, a naturopathic doctor or ND, online.
After a 3 1/2 hour initial Skype consultation, Lemke asked for 30 days to see if her remedies would make a difference in their lives.
“My experience is that for the rapidly growing group of kids like Carson who have been diagnosed with PANS, and who often tend to have significant sensitivity, damage or imbalance in their immune system, homeopathy is a very excellent tool because it is specific enough to be tailored to each individual, gentle enough to not cause more harm than good, and when used correctly is particularly well-suited for improving or balancing children’s immune response to infections,” said Lemke through an email interview.
Three weeks in, Lemke’s treatment “changed our lives,” Cory Spears said.
Carson stopped waking in the middle of the night and he would actually go into a room alone, Melissa Spears said.
Instead of antibiotics, Melissa Spears picks from a number of paper packets containing nosodes, a diluted form of a disease used to treat that same disease.
Carson then drinks the nosode after it is dissolved in a small amount of water.
The nosodes teach the body to recognize the disease and then push it out, said Melissa Spears.
The family also diffuses essential oils and applies them topically to aid Carson’s immune system as well as purifies the air inside the home since toxins can make him sick. No one wear shoes inside the house to keep germs from getting inside.
Carson also avoids cow’s milk, which affects his ability to focus.
The homeopathic treatments have worked miracles and for that they are grateful.
“Our goal is to heal his immune system so that he will no longer have to battle this disorder on a daily basis,” said Melissa Spears.
The homeopathic treatments cost less than $500 annually, substantially less than some western medical treatments, the Spears family said.
A new Carson
The family feels they pretty much got Carson back about two and a half years ago, thanks to Lemke’s homeopathic treatments.
Today, Carson is a sixth-grade student in the gifted program at Mooresville Intermediate School.
He communicates his needs with his teachers and will work in the hallway quietly if he needs a break from the noisy group work that comes with some of his lessons, Melissa Spears said.
He enjoys playing Xbox, collecting and sorting his Pokemon trading cards and playing basketball with friends down the street, he said.
“Over the years it will get better if you have it,” said Carson. “I’ve gone through hard times with it and I’ve been healed from it. I hope other people are able to heal from it too.”
Kate Stevens is a freelance writer: firstname.lastname@example.org
For information about PANS/PANDAS, please contact Melissa Spears at email@example.com or Cory Spears at firstname.lastname@example.org