What do you think of when you think of pandas?
Most people think of the fuzzy, black and white bear.
Not Melody Craig.
For Craig, pandas is a serious auto-immune disease.
PANDAS is an acronym for Pediatric Auto-immune Neuropsychiatric Disorders Associated with Streptococcal infections. It’s a disorder that stems from an initial strep infection, that messes with the brain.
Common symptoms include vocal tics, obsessions, motor tics, behavioral regression, compulsions, anxiety, irritability, sleep disturbances, depression, impulsivity, changes in handwriting, anorexia, aggression, sensory abnormalities, chorea, and emotional swings.
“My child went from the easiest one in the class to being consumed by hundreds of complex tics and movements that were uncontrollable,” Craig, the mother of a PANDAS victim, said. “It happened very abruptly after a week long illness and a year of sickness after sickness.”
She said the tics and movements quickly progressed to behaviors her family had never seen.
“He was like a different person. He was violent, combative and could no longer attend school,” she said. “It deeply impacted our whole family causing us to have to seperate the family for a time to keep everyone safe. It was the hardest thing I’ve ever been through. Watching my sweet, quiet, mild mannered boy turn into this person who none of us recognized was a terrible nightmare I wanted to wake up from but it was our life, not a dream.”
Amy Cross, a registered nurse at Moleculara Labs — which is studying PANDAS, said the illness happens to some people who had a previous strep infection. Instead of getting well, the strep bacteria will cause the patient to stay infected and in certain people the antibodies created by the body that are there to get rid of the infection will access the tissue in the patients by going through the blood-brain barrier.
“The antibodies, trained to attack strep germs, will go after cells in the brain that look like strep germs,” Cross said. “Depending on what the misfired immune system goes after will determine what symptoms the patient will experience.”
About one in two hundred children are likely to have PANDAS.
Some victim’s parents said they felt like failures after going to five doctors before their child was properly diagnosed with PANDAS. Previously, the child had been diagnosed with ADHD, OCD, and even Autism.
Often, the disease is misdiagnosed as a mental illness such as autism, anxiety, or depression.
According to a parent survey in 2018, 63 percent of PANDAS patients have been admitted to psychiatric hospitals. The disease, experts said, is hard to deal with and can be devastating to patients and their families, however when properly diagnosed it can be treated and most children make full recoveries.
One lab in Oklahoma has developed a test for PANDAS. The blood test called “The Cunningham Panel” is named after a scientist at OU Health Science Center, Dr. Madeleine Cunningham. She created the blood test after researching conditions similar to PANDAS over the past three decades. Her test is used worldwide.
Usually, PANDAS can normally be treated through antibiotics such as Penicillin. The antibiotics treat the streptococcus that caused the immunological response and led to the neuropsychiatric symptoms.
Once the streptococcus is eradicated, the immunological response dies down, and neuropsychiatric symptoms subside. Most often, the patient must be treated with antibiotics for a greater amount of time than when the streptococcus is just in the throat and sinuses.
According to a recent study, 75 percent of PANDAS patients showed improvement after diagnosis and treatment with antibiotics.
Melody Craig, the mom mentioned earlier, said her son received long term antibiotics to treat a pneumonia infection and was also treated with anti-inflammatories and medications to calm the immune system and decrease the inflammation in her son’s brain.
Today, three and a half years after her son’s abrupt and life altering brain change, she said her son “is back.”
“He no longer needs most of his medications, he is back in school and doing all the things normal kids his age do,” Craig said. “Looking at him now, you would never know he had experienced a year of terror.”
His mom attributes that to great medical care by her doctor in Houston, Texas and also the support and work that labs and private organizations have done to support the cause and research.