Support Group Value and Design for Parents of Children with Severe or Profound Intellectual and Developmental Disabilities.

The purpose of this study was to interview parents of children with severe or profound intellectual and developmental disabilities to determine the perceived value of support groups and identify recommendations for support group design based on their experiences and feedback. Despite varied experiences with support groups, most parents indicated the value of support groups is in providing a place where parents can feel understood and both share and gather information. Parents recommended support groups be targeted for parents of children with similar disabilities and needs, have flexible structures and qualified leaders, and offer a wide variety of content in various formats.

Acanthamoeba granulomatous amoebic encephalitis after pediatric hematopoietic stem cell transplant.

Acanthamoeba encephalitis is a rare, often fatal condition, particularly after HSCT, with 9 reported cases to date in the world literature. Our case was originally diagnosed with ALL at age 3 years, and after several relapses underwent HSCT at age 9 years. At 17 years of age, he was diagnosed with secondary AML for which he underwent a second allogeneic HSCT.

Nasopharyngeal rhabdomyosarcoma mimicking a peritonsillar abscess.

Rhabdomyosarcoma (RMS) is the most common soft tissue malignancy seen in childhood and frequently occurs in the head and neck region. Pediatric head and neck RMS is often misdiagnosed as common benign conditions. Here we describe an embryonal RMS that presented as a peritonsillar abscess (PTA).

Hereditary spherocytosis: Consequences of delayed diagnosis.

Objective: To determine whether patients with undiagnosed hereditary spherocytosis hospitalized for transfusions might have avoided hospitalization via earlier diagnosis.

Study Design: Charts of all (N = 30) patients with hereditary spherocytosis seen in pediatric hematology at West Virginia University-Charleston were reviewed. Family and transfusion history and presence of neonatal jaundice were recorded.