Welcome to the Pediatric Network!

Dear Visitor:

We're glad you found our website. We hope your family does not face pediatric chronic fatigue syndrome, fibromyalgia, or orthostatic intolerance, but if you do, we are here to help. The Pediatric Network is run by volunteers, all of whom are either parenting a child with one of these conditions, are ill themselves, or both. 

The Pediatric Network was founded by Mary Robinson and Rebecca Moore. Mary Robinson is an educator and mother to three children, two of whom faced chronic illnesses during childhood and adolescence. Rebecca Moore is a 28 year old nursing student who was very ill as a teenager and young adult, but is now well enough to attend school part-time. Both of our families have been involved in chronic fatigue syndrome research, advocacy, and education for over a decade. We are assisted by a caring team of volunteers, whose profiles are found on this page. We created The Pediatric Network to help families and advocates connect, so that a network of informed, supportive, resourceful advocates could grow. If you join our forum, you will find around 300 individuals sharing information about accomplishing their goals while living with these illnesses. It warms our hearts to see the compassion and practical information shared, and to see our dream for this network coming true.  

You may wonder where to begin, when there is so much to read about these illnesses. We recommend starting with these sections of our website:

• What is it like to grow up having an invisible illness? Kids and parents give you the inside view
  A booklet by the members of The Pediatric Network Forum
  
  
• Forum Help Page
  Instructions for joining the forum, answers to common questions about the registration process, and help making your first posts and protecting your privacy online
  
  
• About Us
  Meet the volunteer moderators who keep our forum running
  
  
• Parenting and Family Life section of our website
  Parenting essays and articles by those who understand what your family is going through
  
  
• Youth Voices section of our website
  Teens and young adults share essays about growing up with chronic illness and getting involved in advocacy
  
  
• The Diagnosis of CFS, FM and OI in Youth
  A brochure you can open in Word and print out to share with others
  
  
• Johns Hopkins CFS Clinic's Booklet Introducing the Treatment of Orthostatic Intolerance
  
  
• The Medical Articles section of our website, with information about adolescent CFS, FM, OI and coexisting conditions
  
  
• School Success section of our website
  Information about chronic illness and education, from K-12 to college
  
  
• Transition Planning for Independence section of our website
  Your teen should have transition planning for adulthood as part of his/her individualized education plan! Learn how to help him/her make use of community, state and federal resources that will help support independence
  
  
• Pediatric Network Brochure
  An outreach brochure to let others know about this network
  
  

These are just a few of the resources available on our site. When you visit our home page and scroll down, you will find an Explore Our Site section with links to these pages and many others. You can also browse the site using the blue drop-down menu found at the top and bottom of all pages. Look in this blue drop-down menu for the Articles and Links sections, where you'll find pages about parenting, independence and young adulthood, medical issues, K-12 schooling, coping, fun activities, self-advocacy, support groups, and more. 

When you have explored the website, you may wish to join our forum. You can read all about the forum on our Forum Help Page. This page explains how to obtain a free EzBoard account (EzBoard is the company that hosts our forum and many others). It also describes how to apply for membership in our forum. When we approve your application for forum membership, you'll be able to read the forum, where thousands of posts are organized in topical sections, ranging from College & Adult Life, to Pediatric Research, to Coping Tips & Tricks. We hope to see you there soon.

Welcome again to the Pediatric Network. Let us know if you have any questions. We hope to get to know you soon.

Sincerely,

Mary Robinson and Rebecca Moore
Co-founders, The Pediatric Network for CFS, FM and OI
E-mail: founders@pediatricnetwork.org 

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The Pediatric Network website and forum are run by Mary Robinson and Rebecca Moore. When you follow links on our site to Amazon.com and make purchases, a portion of the sales cost supports our work. Visit our store for shopping suggestions:  gifts for kids or parents, tools for adapting activities, medical and special education books, coping strategies, and more.

Disclaimer: The views in this website and forum are the feelings and opinions of the individual authors and do not necessarily reflect all of the current theories that are being explored and published. Ask your doctor or other health care provider about all medical information that you consider applying to your situation, including the information you read in our website and forum. We take no responsibility for the decisions you or your family members make about medical care. It is up to you to verify that the information you read is correct and applies to your unique situation.