Four-year-old Spencer was a dream child. He was even-keeled, easy going, always with a smile on his face. Mom Shannon Navin of Ohio knew she was beyond blessed for her little boy with the big heart.
But suddenly, Spencer started acting odd. He would shrug his shoulder for no obvious reasons. Shannon chalked it up to him simply being sensitive to the way his clothes felt on him. The intensity of the shrugging accelerated until it reached the point where others began to notice this repetitive motion.
It didn’t take long before the shrugging progressed to Spencer flinging his hands over his head and squeezing his eyes tightly shut.
The behaviors would occur from sun up to sundown for 10 straight weeks.
“If he was eating with one hand, the other would continue to fling.”
When these quirks or oddities began to interfere with his daily life, Shannon knew it was time to seek help. They sought answers from their pediatrician who accepted Shannon’s natural living views. But the doctor and her colleagues had no idea what was happening.
At first, the family was told that kids tend to exhibit odd tics at Spencer’s age. He had stuttered just a bit at two years old and wondered if this was just a developmental progression for him, that he would outgrow this stage.
“Within weeks, we recognized he wasn’t. The movements were exacerbated … so we returned to the pediatrician. At that point, the potential for Tourette’s was discussed and we were advised that, if he did have Tourette’s, there was nothing to be done: we would simply have to wait until the behaviors reached a point that they were impacting his ability to function and then consider lifelong medication. It wasn’t a very hopeful message and we weren’t seeing any improvement.”
Spencer’s grandparents snapped to action and drove four hours roundtrip to spend time with Spencer and give Shannon and her husband a little break to reconnect with each other while fighting to find out what was wrong with their son.
They, too, recognized that something was terribly wrong.
“They saw these tics develop and knew firsthand they were unusual and concerning, and that our doctors really weren’t providing a lot of insight. It was under those circumstances that my mom began searching the internet for answers.”
Many physicians will warn people to stay off the internet and not self-diagnosis. But this time, Spencer’s grandma was spot on.
“I’ll tell you the truth: I thought she was crazy. I as much as told her so. But, in late June, I received a text from my dad that said, ‘Your mom thinks Spencer’s tics are because of strep throat.’ Now, I’ve always been considered the ‘smart one’ in my family and my parents occasionally don’t understand something that seems perfectly obvious to me…so I got on my high horse. Everything I had researched pointed to Tourette’s. Somehow, I never encountered language that indicated there were other reasons for kids to have tics. I was absolutely convinced that my mother didn’t know what tics were or didn’t know how to spell ‘tic’ correctly or something! What could tics have to do with strep throat? I blew her off.”
However, Spencer’s grandmother found a reliable article proving that tics can be caused by none other than a strep infection. Spencer and his dad both had been treated with antibiotics for strep throat not too long before then. Other parallel issues surfaced for Shannon at that aha moment.
While Spencer was being overcome with tics, he also had begun wetting the bed. He had become clingy. His personality changed, too, from a goofy little guy to itching in his clothes and being withdrawn.
“I started to feel like we were ‘losing’ the happy-go-lucky side of him. Decisions were difficult for him to make…he seemed to be folding in on himself. We had absolutely no idea what was going on. So, that’s what we were facing when my mom sent me the article about tics in children.”
One paragraph really stuck out in Shannon’s eyes…
“Tics may be caused by extreme stress, some medications including Ritalin, Dexedrine, and Adderall (stimulants), or Tegretol may cause them. On rare occasions, some infections that involve the brain (encephalitis) may be associated with tics. Other genetic and metabolic disorders, mostly those that affect the basal ganglia may be associated with tics or with tic-like phenomenon. Also, viral infections may rarely cause tics. Streptococcal infections have been associated with the development of tics and obsessive-compulsive behaviors. PANDAS or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections is a known entity in which the antibodies to the streptococcal bacteria attack the basal ganglia causing the above-mentioned symptoms.”
Shannon snapped to action. She researched PANDAS and learned that Spencer’s other behavioral issues could be chalked up to his strep infection, the antibiotic he took and PANDAS. They included ADHD symptoms, separation anxiety, mood changes, difficulty sleeping, bedwetting, changes in motor skills and joint pain.
The family joined support groups, found a doctor experienced in PANDAS and began a regimen of antibiotics for Spencer.
“The tics would subside and we would get glimpses of his old personality. Unfortunately, as soon as the antibiotics ran out, so did our time without PANDAS. The doctor began taking him off if certain foods (gluten, dairy, corn syrup and food dyes) and adding supplements (curcumin, reishi mushroom and olive leaf among others) to his daily regime.”
Slowly he began to improve. He experienced setbacks and eventually visited an expert based in New York. Now 12, Spencer is at an age where he gets mad that he can’t eat what his friends eat and that he must consume a dozen supplements twice a day. He has his blood drawn regularly; his stuttering returned. But his family has an answer to the mystery that had plagued their baby boy for far too long.
“Many families are misdiagnosed for years and PANDAS only gets worse without or with the wrong interventions. Having an early diagnosis and an action plan has helped my husband and I be on the same page about how to help our son. He’s attended birthday parties where he could have neither cake nor ice cream and pizza parties where he couldn’t eat pizza. He’s faced school with an embarrassing stutter or scab on his face and patiently explained to adults and children what PANDAS is and how it impacts him. He lives with intermittent OCD and intrusive thoughts that can’t make his life easy but is still one of the happiest, most amiable kids I know.”
PANDAS has turned their world upside down and was an “incredibly scary diagnosis,” but they caught it early and now have a wonderful support team of doctors, family and friends. Moms, don’t second guess yourself if you suspect something odd is ailing your child. Trust your gut – it just might save your kiddo’s life.
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