InstantForum.NET v4.1.4Lymphangiomatosis & Gorham's Disease Alliance Forumhttp://www.lgdalliance.org/forums/forum@lgdalliance.orgFri, 21 Nov 2008 09:12:33 GMT20http://www.lgdalliance.org/forums/Topic152-12-1.aspxWith Back to School in full swing I though we could discuss what we each do as far as educating school staff and which medical records to send with them. I the past when Claire first started at her current school I had a meeting with her teachers, principle, school secretary and nurse (if they have one). <P>I also have binder that is in the office with her medications. I have them log when every Claire takes medication, her symptoms, and location of pain. (Then when the doctor asks how often she is having headaches I can check) This binder also contains a full listing of current doctors, insurance information and the most recent copies of reports (oncologist, ENT, hearing test, pain doctors, and education plan - including physical restrictions). I also have a copy of a CD with most recent CAT and MRI's. I include this much information in case of a medical emergency. I have instructed that the binder stays with Claire anytime the class leaves school grounds. </P><P>I also include the information sheet from the website (with copies in the front pockets for anyone to take). I also have information sheets from of the websites listed in the link section. I am also considering medical alert jewelery. I also provide the address to Claire's Caring bridge site, which this website is listed as a link.</P><P>I'm excited to hear what other people do. My goal is to some day have a power presentation or movie to show staff at a school in service or meeting. I also take this binder with me when we travel and plan on adding the articles that Jana suggested in the post about travel.Wed, 13 Aug 2008 11:30:08 GMTBeth Mhttp://www.lgdalliance.org/forums/Topic78-12-1.aspxIf there's one thing I wish I could go back and do over, it would be keeping better track of my medical history. Unfortunately, this is not something that they teach you as a patient or a parent and medical facilities in fact make it rather difficult to obtain this information. I learned this the hard way when I was in my mid 20's. I found myself trying to gather 20 years of medical history from various hospitals. I was hoping that some of you might have a good resource, or system to share that has worked well, or any recommendations for parents and patients new to the health care system. Anything to make life a little easier. :)Wed, 11 Jun 2008 13:15:43 GMTJayna