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Kids With Special Needs and Disabilities
Reply to "Angelman Syndrome"
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[quote=Anonymous]Getting an appointment with Dr Rosenbaum takes many months. But he works with other geneticists at Childrens; they are easier to see. I have mixed views about genetic testing: it is not always clear how actionable are the results. We have gone back and forth on this with my 17 yr old daughter, who has characteristics of some syndromes e.g. Turners, Fragile X, but first round testing came back negative. NB at 17.5 yrs old she has still not started her period, has been diagnosed with non-verbal learning disabilities, is somewhat anxious. But generally doing well... However she was recently diagnosed with some form of congenital heart condition and it made me realize that more detailed genetic testing is probably a good thing. There can be all sorts of lurking problems that only become apparent as a child matures. NB we are working with Children's on this. [/quote]
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