Children and Adolescents

Links pertaining specifically to children and teenagers who have Neurofibromatosis and associated conditions

General information

• Helping Your Child Cope with Neurofibromatosis - Helen Hand, Ph.D. University of Denver
  Coping with your reactions as parents (includes the five stages of grief, as applied to discovering that your child has NF), and explaining NF and its consequences to children through their progressive stages of development.

• Neurological Disorders in Children - Continuum Health Partners
  NF isn't covered as a special topic, but information about closely related areas is available.

• Parenting Special Needs - About.com
  Information covers many, many aspects of raising children with disabilities. An excellent resource!

• General Reference, Special Needs, and Disabilities - PEDINFO
  An extensive list of resources for parents, children, and pediatricians, covering a broad range of subjects.

• The Sibling Support Project - Children's Hospital and Regional Medical Center in Seattle, Washington
  "The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs."

  Learning Disabilites

• LD Online
  "The interactive guide to learning disabilities for parents, teachers, and children."

• National Center for Learning Disabilities
  A wealth of information about every aspect of learning disabilities.

• Learning Disabilities Association of America - LDA
  The Fact Sheets section has helpful information on a lot of specific areas of interest.   Includes an extensive list of outside resources.

• Learning Disabilities - Medscape
  Medscape requires visitors to register before using their site, but the excellent information in this article is well worth the extra couple of minutes.

• Family Education.com - The Learning Network
  A wide range of topics is covered here, from pre-school to adulthood.

• General Information about Learning Disabilities - KidSource Online
  A quick primer on learning disabilities and a list of resources.

  Scoliosis

• Getting Things Straight: A Guide to Scoliosis - KidsHealth
  Easy to understand information about scoliosis, including x-rays which show what it looks like.

• Scoliosis Treatment - Kaiser Permanente Hospital
  Explanation of the benefits and disadvantages to three different treatment options so you and your doctor can make informed decisions together.   Follow the In touch link to find people with scoliosis who you can correspond with in e-mail.

  Epilepsy

• Epilepsy - Active First Aid Online
  Basic information about identifying and dealing with epileptic seizures. This would be a good page to print out and share with babysitters or teachers.

• Epilepsy in Young Children - Rob Evers
  A wonderful resource for parents of children who have epilepsy, created and hosted by the father of Kinsey, a young girl with epilepsy.   Extensive information on diagnoses and treatment, and the personal stories of over 500 children with epilepsy.   Contact other parents to share your thoughts.   This site is part of the Epilepsy Web Ring, which links it to a collection of other related sites.

  Visual and Hearing Challenges

• V.I. Guide - Betsy Walker
  "A guide to internet resources about visual impairments, for parents and teachers."   A comprehensive source of information, resources, and even humor, beautifully and lovingly compiled by the mother of a blind little girl named Katie.

• DB-LINK - National Information Clearinghouse on Children Who Are Deaf-Blind
  "DB-LINK is a federally funded information and referral service that identifies, coordinates, and disseminates (at no cost) information related to children and youth who are deaf-blind (ages 0 to 21 years)."

  Brain Tumors and Cancer

• Pediatric Brain Tumors - OncoLink
  Contains and enormous amount of information about the brain and about tumors.   Offers links to other excellent online resources, as well.

  
  

Neurofibromatosis Resources / Carol