Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 Group, When our son was first diagnosed with a deadly disease, we were reeling for quite some time and couldn't take many things in. When we finally got a bit of our wits back, we asked our doctors to begin repeating everything and explaining everything from the beginning AGAIN (and again, and again) until we could understand. We still do this when we are unclear. We will say something like, " I heard what you said. So does this mean ___________? " or " Can you say it again, but with different words? I really want to understand this. " And we KEEP ON ASKING them until we DO understand. Any good doctor understands that we parents are not physicians and need more explanation than they may give the first time. Don't be shy about pressing your docs for a workable explanation, either in person, by telephone, or e-mail. There's so much to PIDs (especially in the early stages) that it's very difficult to digest all at once. Antipov mother to , 4 1/2 years old, X-Linked Severe Combined Immunodeficiency (SCID), 2 BMTS @ Duke, normal T cell function, SCIG weekly Quote Link to comment Share on other sites More sharing options...
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