Re: Did the dr do a good job?

[Guest guest]

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).