Re: My ideal information package for new CAH patients would be......
1/29/01 11:28 AM
Just FYI, for her injectable med, my daughter is not on Solu-Cortef, she has dex. So if you want a generic packet, it might be good not to assume. In the group of materials I received upon my daughter's diagnosis, there was an application for both MedicAlert and for the MAGIC Foundation. Something Roberta said rang a bell -- it might be good to have several blank forms (columns, headings and lines already there) where the parents can write down the time and temperature of the child, the times and amounts any medications were given, and the time and advice any doctor gave. If you have organized notes infront of you, the amount of thought needed to get the information to medical personel is greately reduced. I like your idea!
JanetD
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