Turner's Syndrome heart risks

Posted By wendy deluca on March 03, 1998 at 20:24:04:









My 9 year old daughter Mary, has Turner's syndrome and is the 45X with ISO Y in 1/2 of her cell line.  I was told about this when I was 18 weeks pregnant with her.  Recently I contacted the American Academy of Pediatrics for their standard of care for Turners syndrome.  They in turn sent me a list of yearly tests that Mary should have.  The echocardiogram was in that list.  When I asked my HMO to do these tests since she had never had them they argued that Mary has shown no indication of heart trouble and it would be silly to do the tests.  
Mary had only seen and endrocrinologist once in her life until January of this year.  They agreed that Mary does not need these tests yearly unless she develops trouble.  Since one characteristic of TS is disecting arorta I feel that we should be much more cautious.  
Am I over-reacting?
***@****