Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 Hello- I am a registered nurse and a mom of a child with TRAPS who is followed at the NIH, and have been a member of this group for quite a while as well. I don't write in very often, but I do try to keep up with what's going on. What a frustrating appointment. I believe that is more common than most physicians think it is -- and while there are really no tests to make a definitive diagnosis, the diagnosis can usually be made based on the child's symptoms and history. If you are not comfortable with this doctor or his recommendations, a second opinion would be a very reasonable option. How about contacting the National Institutes of Health? I imagine that it has taken quite a while to get this far, and if this doctor really wants to wait and see more of what's happening, going forward with genetic testing while you're waiting / figuring this out seems also to be a good idea. What's the downside? If it is , the genetic tests should show no abnormality, and if there is a genetic cause to your child's symptoms, at least you will know what you're dealing with. Regards, Kathy (The " A " in " T & A " stands for adenoid / adenoidectomy). Quote Link to comment Share on other sites More sharing options...
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