My son Tyler is 17 years old. He's been seeing a pediatric cardiologist for 6 years now because he has aortic regurgitation because his valve doesn't close all the way. This year his condition changed. He has aorta root dilation. It went from 3.5 to 3.9 in this past year. His heart rate is was also at 45, but he is an athlete. With a 24 test it went down to 35. The doctor is trying to rule out Marfan syndrome (which he doesn't think he has), but that could take 6 months to see a specialist. My son is only 6 feet tall and his wing span is the same, and he
wants to keep playing basketball. If it's not Marfan syndrome, what could cause the dilation measurements to change to much? Should I stop him from playing sports or doing any activity? Should I be worried? When does the dilation become an aneurysm? And should I push for more immediate action? Thank you for listening.
I would like to tell you about my son and his story because it might help you in making some decisions. My son is 15 yrs old, 5'11" and 145 lbs. A year and a half ago he was diagnosed with a bicuspid aortic valve and a dilated aorta. Every six months he is checked by the cardiologist and gets an Echo. Originally his aorta was 3.1 and just last week at his check up it is at 4.0.
In May 2009 we took him to a genetic specialist in NYC. Per the specialist and cardiologist, We then had blood drawn by his primary doctor and had the samples sent to Boston. His blood was tested for Marfans and Lowes Dietz Syndromes. (Both Negative) It was as simple as having blood drawn but did take about 4 months to get the results.
Now as far as sports - Our son went from baseball, football and wrestling in HS to none of those sports. He had a very difficult time with that especially because he didn't feel like anything was wrong. He is still very active in other ways. He bikes, rides quads, snowboards, basketball in driveway, afternoon baseball game here and there. This last week he was given the choice of playing high school baseball or not. He chose not to because he felt that it is not worth the risk of something going wrong or the dilation getting worse. He also said he realizes that he didn't miss the high school sports as much as he thought he would. (I honestly don't think the cardiologist would have given him permission once he saw the numbers, so I was glad of his choice not to play)
Should you be worried? Your a mother you will be worried no matter what. We were told last week that when Lenny's dilation reaches 4.5 then we need to see a surgeon. Lenny gets checked every six months. The prior six month check up he had no change - so in 2/09 & 8/09 he measured 3.7. He had a pretty big increase this last six month time. So every six months my anxiety level rises quite high.
I am waiting for his Cardio. to give me a call back about the drug Losartan (Cozaar). It is an ace inhibitor. He contacted a dr at Johns Hopkins that did a study on this in mice. Lenny might be put on this drug. You can go to the study from the link below. Note: all the pictures on the link don't show up unless you hit print preview. http://www.hopkinsmedicine.org/Press_releases/2006/04_06_06.html
Might be something to ask your sons cardio. about.
Thanks so much for the feedback and advice. This is very stressful since my son feels no symptoms and I can't seem to provide him with many answers. It seem like a big waiting game. Again thanks for your story. I will be checking out the links and info you gave me. I really appreciate it. I feel better at least doing something proactive instead of just sitting here doing nothing. Good luck to you and your son. He sounds like a very fine young man.
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