O/T Medical question Marfan Syndrome Options

[spare time toys]

Does anyone here have a relative with this? Our little girl has been diagnosed with it. They did the echocardio and she has a slight enlarging of the aorta. They said to come back in a year and they will remeasure, I just want to know how this changes things if you have it in your house? She is just not suposed to play high impact sports.

Thanks for any info.

-Larry

[spare time toys]

She went in for just some normal stuff and saw a new Dr. She found her blood press. was 140/110 and questioned family history and meds. She would not let them come home until the blood press went down. Her old Dr. would just pop in mumble some stuff and leave so they started going to this new one who just sees females. They liked her and it was on the third visit she asked if she had ever been checked for this. She has 90% of the in office check stuff. the one where you grab around the wrist on her she can get to the second knuckle. She also has the back issue as well as the sunken chest and joint flex. She sent us to a Dr. Akoe who is listed as the top child heart specialist in Dallas. We did the office tests for her and the ultrasonic heart measurements thats when they found the enlarging of the aerota. She said that she was almost positive Lizzy has it but wants to hold out for the genitics guy. So we will see what comes out of that visit.

Thanks everyone for all the info and the links (IMG:style_emoticons/default/beerchug.gif) the marfan.org one is where we have done most of our reading