The cardiology department where my son is being referred to has a Dr that specializes in Cardiac Electrophysiology thank you for the heads up on that one I will be sure to ask if his work up will include that.
Im sorry in my first post I meant to specify he has had both an EKG and an ECHO was tired when I originally posted.
I also suggest to have more test done other then electrocardiogram, EKG can give a ball park but I have seen mine come back as much as 6 points off the correct EF. Also get advice from more then just one cardiologist about it, I had one that said I was improving and I dropped 6 points wile in his care. a Cardiac Electrophysiology is also a good idea to see if its drops down to below 40 if not now. more then likely Corag is in his future.
I wish you luck,
Thank you for your information. We have known about the marfan for years one of my other children has shown early features for the syndrome as well.
The EF came to me as a shock when we got the ekg ecg we were looking primarily at the Aorta since rupture is a possible outcome for people with Marfan. So I have known to be prepared to have something to do with the heart. His internal specialist told me the lower area of his heart is having difficulty "squeezing" and other than that was uncomfortable with providing any more information, as this is something that is out of his realm of expertise. While I am thankful to have a candid Dr. I am left with trying to give my son the answers he is looking for other than be patient. Thank you for your response
I've heard of Marfan's of course but never read much about it. I just took a peek at another site and it seems Marfan's affects the connective tissue in the body. That means it affects tendons, ligaments, heart tissue/valves and blood vessels.
As for questions, perhaps ask if his heart will continue to get worse, will he need valve surgery in the future, how will they manage his ejection fraction so it doesn't drop any lower. In the meantime read up on Marfan's so you're more informed and most likely questions will pop into your mind as you go.