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View Full Version : Some new (to me) stuff on Marfans



Pooka1
08-09-2010, 08:25 PM
My kids had their echos and everything was normal.

The pediatric cardiologist mentioned he was now involved in a study of Marfans which obviously is a good thing in our case.

As I understood him, he said that if you have Marfans and get through your 20s, basically, if you get to 30 without any aortic root enlargement, the chance of enlargement and dissection drops off a lot after that point. He is not saying the chances drop to zero so he is not in contradiction to the metabolic geneticist who said you can never stop monitoring if you have certain indicators. But I think if my girls get to 30 then they can relax about it and maybe only get echos every 5 or even 10 years.

He recommended they continue to get echos every 2 years until they are out of their teens and then I think will have to hand them off to an adult cardiologist. So it will be interesting to see that that next person says when we cross that bridge.

LindaRacine
08-09-2010, 11:05 PM
Great news!

mariaf
08-10-2010, 10:34 AM
Yes, that's great news Sharon - and it must be quite a relief. I'm very happy for you and your girls!

tonibunny
08-10-2010, 03:52 PM
That's very encouraging news Sharon! I'm very pleased to hear it :)

Pooka1
08-10-2010, 05:13 PM
Thanks gals. I appreciate that.

I read somewhere and don't know if I mentioned it here but it seems that a majority (though not all) Marfans patients have the eye signs/symptoms. My daughters both have perfect eyesight so that's another good sign they don't have Marfans.

They only have involvement of one system (skeletal) to date though they have several issues within that system. A curious thing is that one issue, pectus excavatum resolved on its own though they had what the pediatrician referred to as "moderate" cases meaning more than mild and less than severe.. it was immediately noticeable to everyone who saw them. They had that as toddlers and pre-school age but have no sign at all of it now and haven't for several years. I don't know how common it is for moderate cases of P.E. to resolve on their own but I attribute it to the power of no prayer whatsoever if is is unusual.

If they only ever have just the skeletal findings then they will never meet the diagnostic criteria for Marfans and likely don't have it, thus vindicating the predictions of the orthopedic surgeon and pediatrician. :)