October was a busy month for awareness, education, and research. We are happy with the number of families that agreed to open their hearts and homes and share their experience with various news outlets. Below is a “round up” of those stories that made a great impact this month. Thank you.
New York Family
“Pediatricians should do a simple screening if there are abrupt onset symptoms,” says Dr. Eric Hollander, clinical professor of psychiatry and behavioral sciences at the Albert Einstein College of Medicine and director of the Autism and Obsessive Compulsive Spectrum Program at Montefiore Medical Center and Albert Einstein. “If PANDAS isn’t on their radar, and they aren’t screening, the lack of treatment could lead to more clinical, academic and social consequences.” MORE
On March 2, 2009, something snapped inside Paul Michael Nelson. In the middle of the night, his parents found the 7-year-old boy stabbing the door of the family’s home office with a kitchen knife, trying to get at a computer that was off-limits after his bedtime. When they stopped him, he flopped around the floor on his knees, barking like a dog. He tore at blankets with his teeth and spoke in gibberish. MORE
Days and months dedicated to the awareness of health and illness are so plentiful, their effectiveness may be diluted. But if ever a condition needs to be on the calendar of causes, PANDAS-PANS Awareness does. MORE
The Irish Times
“Two years ago, Ethan started rolling his eyes up and backwards and, soon after, began clenching his fingers and bending his arms. We were told to ignore it and hopefully it would go away,” says Karen.
“One year later his tics had progressed to full body bends and crunching which hampered his walking and he could no longer drink out of a normal cup as he continually spilled. He developed irrational fears, displaying pure terror at things that hadn’t bothered him in the past. He cried easily and had many tantrums.
“He also started wetting his bed and we found ourselves walking on eggshells around him for fear of saying the wrong thing to set him off,” his mother says. “He asked us to help make him better as he wished ‘things would go back to normal’.” MORE
Multiple visits to four different pediatricians didn’t shed any light on this sudden and bizarre change in behavior. The doctors speculated on a range of possibilities, including allergies, a neurological disorder called Tourette Syndrome, and OCD, and wanted to put Andrew on anti-tic medication.
However, Pam and her husband resisted, believing that there had to be a logical explanation for why their son’s personality and health suddenly declined overnight. “This was a very scary and lonely time,” Pam admits. “Many people didn’t understand what was happening to our son and we barely had a enough information to understand it ourselves, let alone explain it,” she adds. In desperation, she began doing her own research and reached out to a local support group for parents of kids who had similar symptoms. MORE