She woke up one day obsessed with how her socks felt. She would only wear flip flops. Tennis shoes made her want to scream. She wanted her dad to put her clothes in the dryer because they might feel better if they were warm. Handwriting became labored; her letters needed to be formed exactly right. Her 15 minutes of assigned reading turned into an hour of repeating sentences and words until they sounded perfect. Separation anxiety kept her home and glued to my side. The screams as she experienced panic attack followed by panic attack broke my heart.
What in the world was happening to my daughter?
She was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS), a diagnosis that was eventually expanded to Pediatric Autoimmune Neuropsychiatric Syndrome (PANS).
PANDAS and PANS are types of Post-infectious Autoimmune Encephalopathy. In the simplest of terms, my daughter’s brain becomes inflamed by various bacterial and viral infections, strep being the initial trigger. When her brain is attacked by her own antibodies, she suffers from terrible psychiatric symptoms like OCD, anxiety, depression, and separation anxiety. According to the National Institute of Mental Health, other symptoms associated with PANDAS include:
- ADHD symptoms
- Mood changes
- Trouble sleeping
- Changes in motor skills
- Joint pains
Children’s Autoimmune Brain Disorder Association (CABDA) is dedicated to improving the quality of life for children with autoimmune brain disorders through awareness, research, and support. No child or family needs to battle this disorder alone.
Awareness is one of CABDA’s primary goals. So many families see these drastic changes in their children and have little support or information to proceed. Bringing awareness to families, general practitioners, psychiatrists, and educators paves the way for quick and thorough treatment. Educating the medical and educational communities expands the chances of the correct diagnosis as well. Too often, children with these types of autoimmune encephalitis are labeled mentally ill and given psychiatric medications instead of the needed antibiotics.
CABDA, located in Texas, is also focused on research and support goals. Research is desperately needed to understand more about molecular mimicry and infectious attacks on the brain. While there is a basic understanding of the autoimmune dysfunction there is much more to learn. With better research comes better treatment and improved quality of care.
Support for families is essential. CABDA has many resources on its website to provide distraught families with help they need. Having a child diagnosed with this condition is stressful, terrifying, and exhausting.
Please visit CABDA’s website at cabdatexas.org for more information.