Written by the Executive Director of PANDAS Network JC Konecny
In April of 2014 something very wrong started happening with our then 5-year-old daughter. This sweet, brilliant, beautiful, thoughtful, quiet child began having what looked like panic attacks. She insisted something was stuck in her throat. We took her to several doctors who could not seem to find the source of her problem. After seeing several psychologists and psychiatrists a video of her attacks prompted one of her doctors to suggest that her illness was not psychological, that it seemed to have a physiological source. He sent us to a neurologist, suspecting a brain tumor.
After a battery of tests: MRI, EEG, spinal puncture, and blood work we still did not have a clear answer. Her continued illness landed us in the hospital several times. Our daughter was uncontrollable – fighting for her life with no clear medical problem. Screaming for hours at a time insisting that she could not breathe and felt as if she were dying. She was terrified, begging for us to help her. Really there just aren’t words to describe watching your child go from functioning normally, enjoying kindergarten, to falling apart almost overnight. Finally, Pediatric Neurologist at Georgetown University Dr. Elizabeth Latimer put the pieces together after a careful review of her medical record and inflammatory markers in her spinal fluid. Our daughter had strep in March of 2014, one month before her overnight OCD started. Our daughter had PANDAS! Now that she’s been diagnosed properly and received treatment she’s back to functioning normally. Our child who could not leave the house, who regressed to acting like a toddler, and at times could not coordinate her body to swallow her own saliva, is now back in school, enjoying chess club and sleepovers with friends.
The good news is that when diagnosed and treated early PANDAS and PANS do not have to progress to the point of our daughter’s illness. The treatment can be simple. My hope for the PANDAS Network, the non-profit that serves children and families battling PANDAS and PANS of which I am now executive director, is that our organization can help educate all parents and physicians to know the signs and symptoms of this disease and seek early treatment.
It’s important to know that PANDAS presents with a range of symptoms and severity. Some cases can be mild and remit on their own. However, our daughter’s case was quite severe – a result of being undiagnosed and therefore untreated for nearly 18 months. Parents needs to ask, “Is my child’s formerly normal functioning gone?” and, “Are these changes sudden?”
Here’s what parents need to know and look for:
- PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. Has your child recently had strep?
- OCD and or Anorexia
- Personality changes
- Decline in math and handwriting abilities
- Sensory sensitivities
- Sleep abnormalities