re: re: re: Any tips on putting together a "Tell All Folder" about CAH for family/friends?
Aug. 2nd, 2004   1:21am

 Hi Sherry

 It was me that put the booklet together for my Granddaughter. I got several print outs from CARES foundation. Used the glossary from here . I took a Three ring binder and used the slip in sheets and put the educational info in. Then I  put in her Doctors list.........Names /address/ phone numbers and Childrens hospital in Norfolk. Next page I have the emergency form ......I believe I got from here also and had the Doctors fill it out and sign it. They wrote a copy of there own letter with it . I have one From Pediatrics and Endo. Next I have the instructions for giving the shot and copies of her medicine labels and prescriptions. Next page Birth certificate  and updated photo of Mitzi! Copies of our guardian papers/ Copy of her social security card/ Copy of her medical insurance card. Copies of her immunization shots. Records of any hospital stays or major illness. I went to the extreme of making a food list of likes and dislikes and her eating habits. She is a grazer and a picker and not a BIG eater. Some short paragraphs on where she is developmentally at the present/ how she plays, favorite toys /bedtime. The last page I address is discipline and HOW I PREFER It to be handled. I took this to her pediatric doctor and she gave me some additional emergency forms to have notarized for babysitters and Relatives to have when they keep her. This has been VERY helpful to me and our family as if and when an emergency arises we know where this book is kept with her shot of Solucortef. The cover of this book is a slip in page saying MEDICAL EMERGENCY ADRENAL INSUFFICIENCY with clip art of a shot/  rubber gloves and a bottle of pills. It just makes me feel more prepared. Hope this helps! Cherry

Cherry Lane
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