Synonyms of Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation- late onset central hypoventilation syndrome with hypothalamic dysfunction
- LO-CHS HD
- ROHHAD
- ROHHAD-NET
- ROHHAD with neural tumor
Disorder Subdivisions
General DiscussionRapid-onset obesity, hypothalamic dysfunction, hypoventilation, and autonomic dysregulation (ROHHAD) is a rare disorder first described in 1965. Since that time fewer than 50 children have been described in the literature with this disorder. These patients have a somewhat variable presentation, but they typically show the following constellation of symptoms: increased hunger (hyperphagia), obesity, impaired control of breathing (hypoventilation), poor temperature control, water imbalance, decreased pain perception, behavioral disorders, strabismus, abnormal pupil responses, elevated prolactin levels, altered onset of puberty, and tumors of neural crest origin.
Though these children can often be supported with mask ventilation at night only, a subset will require 24 hr/day ventilation via an opening in the throat (tracheostomy) into which a small tube (cannula) is inserted, through which mechanical ventilation can be delivered.
Organizations related to Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation- International Foundation for Functional Gastrointestinal Disorders
P.O. Box 170864
Milwaukee WI 53217
Phone #: 414-964-1799
800 #: 888-964-2001
e-mail: [email protected]
Home page: http://www.iffgd.org
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: [email protected]
Home page: http://www.netnet.net/mums/
- National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
Bethesda MD 20892-2540
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: [email protected]
Home page: http://www.ninds.nih.gov/
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. ? (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html