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

[orthobiz]

As a regular practicing orthopedist, I've seen the occasional patient with Marfan's. To reassure you, there's lots of BAD stuff on the web, as you've found out and as the Good Dr Evil already pointed out.

Not knowing much else about your daughter's case, I find it encouraging that she is being worked up for possible Marfan's at age 14. What this means to me is she does not have a severe case. Believe me, when it's severe, the kids find their way into the cardiologist, ophthalmologist and orthopedist when they're exceptionally young!

You didn't mention why she is thought to have it... a height/weight issue or is she having a heart murmur, or blurred vision?

As far as picking a doc, stick to what your pediatrician says to start with. Marfan's is common enough that most pediatric orthopedic surgeons are comfortable taking care of scoliosis and other possible problems. When it comes to book-writing docs, some of them write the books because they know the most and are the best. And some write the books because they're not that great in the OR but sure know how to pen a page turner...Kinda like the "those who can't, teach" phrase.

Best of luck,

Paul