A Mother’s Perspective
by Lisa Porterfield Thompson/photos by Molly Minter
After her 9-year-old son, Landon, was diagnosed with PANDAS, Amanda McKee encourages other parents to always keep searching for answers
Amanda McKee is a fourth grade teacher at De Queen Elementary, and has a 9-year-old son and an 8-year -old daughter. So far, her parenting journey has frustratingly held more questions than answers, and she’s ready to share. “My sweet boy came into the world in February of 2008,” Amanda said. “He loved to cuddle and was a genuinely happy baby. He loved being outside and always enjoyed being around people. He had the cutest smile and the sweetest personality.”
It was not until Landon was 2 that Amanda noticed something was changing. “We began making frequent trips to the doctor,” she said. “He had one ear infection after another, then strep throat back to back. My sweet baby’s personality soon took a turn for the worse, in what I assumed was a late onset of the ‘terrible twos.’ He would have wild tantrums; he’d hit his head on the floor over and over, bite his arm and hand until they bled, and lash out at others.”
Amanda describes her breaking point. “I finally took him to the doctor, expecting to be told this was a phase, but the doctor diagnosed Landon with Oppositional Defiant Disorder. We were referred to a therapist and did the best we could to help Landon cope. At age 6, Landon was diagnosed with ADHD.”
Amanda admits she was hesitant to medicate her son. “I never wanted to,” she said, “but when your child has an issue, you think differently about medications that could help.” But the medications were not completely helping, and Amanda was desperate.
When Landon was in first grade, she took him to the Dennis Developmental Center in Little Rock, Arkansas. The team at DDC determined that Landon’s frontal lobe was underdeveloped, which could have been caused by the umbilical cord wrapped around his neck at birth and could be causing behavioral issues in adolescence. “He became extremely emotional,” Amanda remembers. “Someone could look at him and he’d burst out crying. We changed his meds, which caused him to be overly aggressive, even more than before. We tried another doctor and another medication, and just found more issues. At age 7, Landon began having suicidal thoughts, and I was just done. We saw a behavioral therapist in Texarkana.”
The therapist changed his ADHD medication once again, to no avail. “At the time,” Amanda explains, “there were only seven medications for ADHD on the market, and we had tried four of them with no success. I was beginning to realize that ADHD wasn’t the cause of Landon’s issues but we still didn’t have any answers.”
Amanda made another appointment with a different therapist in Benton, Arkansas. Meanwhile, Landon began having physical tics, like the involuntary movements that are typical of Tourette syndrome. He started uncontrollably blinking his eyes and scrunching up his nose. He developed a vocal tic like throat clearing. The therapist in Benton ruled out autism, but brought up the possibility of a disorder called PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorder Associated with strep.
Like any parent, Amanda began to research and read any information available about PANDAS. She learned that PANDAS can present many symptoms including tics, anxiety, ADD/ADHD type behaviors, sleep issues, impulsiveness, irritability, bedwetting, depression, and suicidal thoughts. It seemed that Landon had experienced each of these over the years. Amanda thought she was getting closer.
She quickly learned that no doctors in the state of Arkansas would diagnose or treat PANDAS, so she sought out a doctor in Claremore, Oklahoma, for the initial diagnosis. “When the doctor looked at his lab results, she was certain Landon had PANDAS,” Amanda said. “His anti-DNase level, which should have been no higher than 175, was 763. She swabbed his throat to check for strep. He wasn’t running a fever, didn’t have a red throat, and hadn’t complained at all, yet he had the infection. His body had become so acclimated to having strep that he wasn’t even displaying the normal symptoms anymore.”
Come to find out, Amanda believes Landon’s symptoms were all caused by this Autoimmune Neuropsychiatric Disorder related to strep. As Amanda explains it, the strep in Landon’s body had mutated and tricked his immune system into thinking it was a good, healthy cell, and had been allowed into his brain, and attacked his basal ganglia and frontal lobe. PANDAS had actually been the cause of the multiple diagnoses Landon had received earlier on in his medical history. The ODD, ADHD, OCD, and Tourette syndrome were all issues Landon was experiencing due to the strep attacking his brain.
With newfound information, and hope, Amanda took the PANDAS diagnosis and started treating Landon to ensure his flare-ups were minimalized. “After getting the results back from the Cunningham Panel confirming the diagnosis, we were put in contact with a doctor that specializes in PANDAS. We are currently treating with antibiotics and steroids when he has a flare-up,” Amanda said. “He does well if he stays healthy, but with a flare-up he becomes aggressive, his pupils dilate, and it’s like living with The Hulk. He smashes stuff, kicks and punches and throws things. I just focus on calming him down, talking and rationalizing with him. Mostly, my job is keeping him calm while also protecting my daughter, because she’s an easy target for him. Sometimes he hallucinates and becomes very anxious or afraid.”
Amanda says that right now Landon and her family are in a good spot. He loves to be outdoors, hunt, fish, and target practice. She encourages any parent who is facing multiple diagnoses for their child and struggling with similar issues to keep searching for answers and remain an advocate for their child.
