The purpose of this listserve is to provide information and emotional support to parents of children diagnosed with kernicterus or hyperbilirubinemia (high bilirubin). We will share our experiences, information on therapies, treatment, problems, successes and failures, as well as, strategies used in dealing with a child with special needs. Families that have children with kernicterus and other bilirubin induced neurological diseases as well as Professionals that deal with children diagnosed with kernicterus are also welcome to join.

Kernicterus (KI) is a rare neurological disorder characterized by excessive levels of bilirubin in the blood during infancy. Bilirubin is an orange-yellow bile pigment that is a byproduct of the natural breakdown of hemoglobin in red blood cells (hemolysis). Toxic levels of bilirubin may accumulate in the brain, potentially resulting in a variety of symptoms and physical findings. These symptoms may include lack of energy (lethargy), poor feeding habits, fever, and vomiting. Affected infants may also experience the absence of certain reflexes (e.g., Moro reflex, etc.); mild to severe muscle spasms including those in which the head and heels are bent backward and the body bows forward (opisthotonus); and/or uncontrolled involuntary muscle movements (spasticity). Hyperbilirubinemia may result in athetoid cerebral palsy, hearing loss (auditory neuropathy), gaze abnormalities and dental enamel malformation.

PICK’s website (updates coming soon!)
www.pickonline.org

Family support group - "Affected by Kernicterus - PICK"
www.facebook.com/groups/kernicterus

Public facebook page (Be sure to have all of your friends "like" us!)
www.facebook.com/newbornjaundice

Kids and teens affected by KI -"So Much More"
www.facebook.com/groups/373858846028230/

PICK Twitter
www.twitter.com/newbornjaundice