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The Pediatric Network News June 2003 The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance Co-founders: Rebecca C. Moore and Mary Z. Robinson Table of Contents
You received this e-mail as a participant in the Pediatric Network forum or as a subscriber to our newsletter listserv. Instructions for unsubscribing are included at the end of this e-mail. Please note that we offer our newsletter in two e-mail formats: One is sent to all forum members through EzBoard; another is sent to subscribers via our listserv (which is primarily for individuals who are not members of the forum). If you are a forum poster and listserv subscriber, you may receive two copies of this newsletter. See the instructions at the end of this newsletter or visit our subscription page for help managing your account. We would be happy to help you with subscribing or unsubscribing. Write to webmaster@pediatricnetwork.org. The Pediatric Network is a gathering place for all who have an interest in pediatric Chronic Fatigue Syndrome (CFS), Fibromyalgia, Orthostatic Intolerance, dysautonomia, or similar illnesses. It was founded in the hope that we could pool our resources in one place on the internet, so that people facing one of these pediatric conditions could begin their research at a comprehensive, supportive website. The forum is a community linked to our site where all can come together and talk to others dealing with these illnesses. There is a place for professionals to connect with other professionals, for parents and teachers to get information on academic planning for youth, and for parents and youth to connect with their peers. There is even a section for healthy siblings to share their experiences. In each issue of The Pediatric Network News, we will highlight new research that has been published, conferences and outreach projects you may wish to know about, and tips for using the forum. If you have any suggestions about how to make the News more personal and useful to you, please let us know. We want your experience at the Pediatric Network to be as positive and informative as it can be, and for your time in the forum to be all you needed it to be. Help us out if you have suggestions. Write to us at mary@pediatricnetwork.org and rebecca@pediatricnetwork.org. 1. Our home page has been reformatted to make it easier for you to find the medical, educational, parenting, and transition planning articles you need. Please stop by and check out the new layout, site guide, links section, and forum help page. If you have suggestions for improving the website, they are welcome. Send them to webmaster@pediatricnetwork.org. 2. In an attempt to make the PEDIATRIC NETWORK FORUM an easier place for all to navigate, post and share ideas we designed a new forum section which is now the first topic in the Home Page of the Forum. It is titled Welcome! Start here for helpful tips. Please begin your visit here so we can greet you, help you know where and how to post, and provide guidance about your privacy and safety. This is an informational section and we hope if you have not had a chance to check it out, you will do so. If you have any suggestions for us on how to make the Navigating experience easier or more meaningful at the Pediatric Network, please share your ideas with us at mary@pediatricnetwork.org and rebecca@pediatricnetwork.org. 3. Here is a wonderful article that Rebecca wrote titled, "The Diagnosis of Chronic Fatigue Syndrome, Fibromyalgia and Orthostatic Intolerance in Youth." The Link is: http://www.pediatricnetwork.org/medical/diagnosis_article.doc. A month ago the Pediatric Network launched our first ever fundraising effort by reaching out to our family of members. In planning for the year ahead we knew that there would be expenses for our site and forum, as well as doing some outreach to doctors to raise awareness of the Pediatric Network for CFS, FM, and OI. We would like to thank the following members and their families for their generosity. BENEFACTORS ($50 PLUS) The Zuckerman Family FRIENDS OF THE PEDIATRIC NETWORK ($20 PLUS) Joanne Zimmerman (in honor of our granddaughter Megan Robinson) As you can see the response has been generous, and donations continue to come in. If you would like to read our letter of request link to http://pub96.ezboard.com/fpediatricnetworkfrm25.showMessage?topicID=57.topic or see how you can make a donation to our cause at: http://www.pediatricnetwork.org/donate.htm On April 23, 2003, Shanon McQuown, one of our moderators for the School Issues K-12 Forum, offered a presentation in Wyoming. How lucky we are at the Pediatric Network to have Shanon in our family. I am excited to know her, and to hear of her success in helping children, parents, and educators deal with this illness. Here she shares her experience with us all: When my son became ill four years ago, I was completely ignorant of all of the different aspects of CFIDS and some of its coexisting conditions. I was unaware of the fact of cognitive dysfunction. As I learned more from attending conferences, reading books, researching on the internet and speaking with my son, I realized that something had to be done to help him achieve the academic success he'd had before he became ill. As a Special Education Teacher's Assistant, I had learned many different strategies from Professional Development Seminars. I have worked with a variety of special needs and was delighted to discover it was possible to apply what I'd learned to the symptoms my son was facing. I worried about other children. I prepared a presentation for educators addressing the symptoms of CFIDS, FM, OI, etc. In the presentation, I address the symptoms, how they impact children socially, physically, academically and yes, even the psychological fall-out from the other areas. I then, begin to give ideas and suggestions to help a child learn despite the illness. We discuss modified school days. We discuss specific instead of general modifications for assignments, tests, projects, etc. We discuss the accommodations that might be useful for certain symptoms. The attendees are broken into small groups. I give each group a questionnaire answered by both a (anonymous) child with CFIDS and his/her parent. The groups are then given the assignment of applying what they've learned to the symptoms of the child who is their case study. The groups then present their recommendations to the other groups. I then send the recommendations to the parents of the children. I gave presentations locally, hoping to help every child have a more pleasant educational experience at the onset of the illness than my son, Anthony, endured. On April 23, 2003, I was blessed with the privilege of giving a workshop on CFIDS and the Impact on a Child's Education at an elementary school in Laramie, Wyoming. The school contacted CFIDS Association. The mother contacted Mary. Somehow, Rebecca and Mary ended up referring them to me. The school system arranged for me to fly to Wyoming to give a workshop for the teachers of a little girl with CFIDS/FM, "K". I was drawn to go because the the illness was isolating the child from her peers. At ten years old, K was wanting to know when she could legally switch schools. At ten years old, the response she was receiving from peers and others was making her think she was "crazy." I HAD to go! One added plus was that I was allowed to observe K in her class. With permission from the girl, her family and the school, I spoke to the children in the class about being ill and having "special" needs. I used my lupus as the example of "looking fine" while something is very wrong. We played a true/false game. By the end, the children were sharing with me their ideas of how to help someone who had a special need. They addressed ways K communicates when something is wrong and how to help her. I fought tears because of the compassion of this group of bright-eyed ten-year-olds. They gave me hope for the future of our children. They gave me courage to continue to speak out for these children. I guess I need to tell you that on the day I was to speak, K announced to her class that I was coming to tell them (school staff) how to teach her because they weren't doing it right! I thought I was going to die. I was a bit apprehensive about the assumptions that would be made about me because of the comment. Still, if my presence gave K hope, I'd gladly survive whatever I had to face. Later, in the afternoon, I held the workshop. The attendees were a mixture of teachers, administrators, supervisors, a case manager, a school nurse, and related services specialists. The group contained some skeptics, but each person gave his/her undivided attention. They took notes. They asked questions. As with any group I've spoken to, I sensed confusion and frustration. It was obvious that people were overwhelmed. They were looking for answers. They truly wanted to help, but they didn't have the whole picture of what they were dealing with. I could almost feel the moment when it began to click. The questions changed to ideas and suggestions. When they were given their case studies, I was humbled by the manner in which they deliberated in order to face the child whose case was in front of them. New ideas were presented at the end. My task of raising awareness was now complete. When the workshop was over, my heart leapt to see people speaking with the mother and sharing newfound ideas to help K. Did I make a difference? All I cared about was for that moment, for that little girl, could I really make a difference? Approximately two weeks after I returned home, I got a call from K and her mother. It seems the school and the mother are working well together. Don't we ALL know how stressful it is when we become adversaries instead of partners? Instruction methods for K changed. That was my reward…or so I thought. K told me that she has friends in class, now. She says people don't tease her. Her mother says K doesn't come home from school crying. K went on a fieldtrip with her class and enjoyed herself (in a wheelchair). Children offer to help K when she's struggling in class. K KNOWS she is not crazy. K is learning how to conquer mountains. I am the one who is truly blessed. Anthony's mom a.k.a. Shanon See this thread about attending the September Lobby Day in Washington, DC: http://pub96.ezboard.com/fpediatricnetworkfrm25.showMessage?topicID=20. 6. New Pediatric Research & Publications Peter Rowe Interview: Adolescents with CFS You may also read Dr. Rowe's General Information Brochure on Orthostatic Intolerance and its Treatment on our website at http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm. 7. IDEA Update - Special Education Bill - Contact Your Senators The Individuals with Disabilities Education Act (IDEA) must be reauthorized by Congress this year, and already advocates are quite concerned that the House of Representatives passed a bill that seriously weakens special education. The Senate is expected to discuss and vote on its version of the bill soon. If you are a parent with a child with an IEP or a 504 plan, or you are a student with one yourself, then you need to educate your senators about special education issues now, before battle lines are drawn. This law affects all us in the United States. It's important that senators realize how much youth and parents care about it. For updates and ways to take Action visit Pam & Pete Wright at the Wrightslaw website. You can read the May issue of their free online newsletter at this link http://www.wrightslaw.com/nltr/03/nl.0529.htm where they discuss this pending legislation and the impact it may have on our children and their education. If you do not already receive this wonderful informative free newsletter I recommend you link to the site and subscribe. On Friday, June 13 the National Disabled Students Union is organizing a national Speak Out day about special education. The point is for YOUTH to speak up and let lawmakers know that this bill has a gigantic impact on our lives and that we want to be included in the process of improving it. NDSU is offering a number of ways for youth and supporters to participate: a Internet-based petition, a forum for posting comments, and advocacy and media packets. You'll find links to all of them here. Even if you don't have time to do much about IDEA, please tell the youth you know about the students' petition and take a few minutes to telephone your senators and say how important it is that IDEA be preserved. Personal stories from young people and parents are notable and may help persuade senators to support a stronger, more effective bill than was passed by the House last month. Other organizations offering updates and action on IDEA include Justice for All and the Disability Rights and Education Defense Fund. 2nd Wednesday of the month: PARENTS' CHAT 3rd Tuesday of the month: YOUTH (MALES-ONLY) CHAT 4th Wednesday of the month: YOUTH CHAT How to Attend: Go to the Forum Home Page, log in with your EzBoard user name and password, and click on the "Join Live Chat" link found at the top of the page. If you need help registering with EzBoard, see the help information we've provided in this forum section: Are you new? Start here!
10. Tips for Posting: E-mailing a Member Privately As a member in the forum, sometimes you may read a post and wish you could contact that person privately, not publicly by posting. You may decide to post your private email address and ask the member to email you. While this is totally acceptable to do, you may not be aware that this is a place that SPAMMERS get your email addresses from. By publicly posting it in the forum they can take it and add it to their list. BUT that does not mean that you can't still contact another member. If you simply click on the persons user name (to the left of their post) their profile will pop up. On the right of the screen it says My Inbox: Send me a Message. If you click on that link it will take you to the messaging service on the Pediatric Network and you can dash a note to the member. You can send them your private email address here and it will not be publicized, OR you can just email back and forth privately on this service. When you come to the forum make sure you check your OWN INBOX. Next to your username at the top right of the screen it will have a bolded number if you have a new message. Simply click on this and your message appears. If you would like to have an email that you can be comfortable posting, without using your private one may we suggest setting up a free account on line at one of the many places that offers this service. (ex: yahoo.com, excite.com etc.) 11. Send us a donation by buying the new Harry Potter book!
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Confused? Need help? Visit our newsletter subscription page or e-mail webmaster@pediatricnetwork.org. Visit or Contact Us: You can learn more about The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance by visiting our home page at www.pediatricnetwork.org. You can contact the Pediatric Network co-founders, Mary Robinson and Rebecca Moore, by e-mail at mary@pediatricnetwork.org and rebecca@pediatricnetwork.org. | |||||||
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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. | |||||||||||||||||||
