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More info on sports and bicuspid aortic valve with aortic dilation
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More info on sports and bicuspid aortic valve with aortic dilation

Hi All, my head is reeling right now. We just received a diagnosis of Bicuspid Aortic Valve with minimal leak and dilated aortic root at approximately 4.0. I don't totally understand it all, and am trying to find out more information. The only reason we finally found out is because of his murmur we were told that we needed an EKG for sports. When getting the EKG the Dr stated he heard T3 gallop. So we were sent for an Echo. When we received results, we were told that everything was normal, but had a mild tricuspid regurgitation. So, we went for a consult with a pediatric cardiologist and were told all of the above diagnosis information. It is heart breaking because my son has been involved in high school football and has been doing VERY well. He is team captain, playing several special teams, playing Varsity as a sophomore and playing both offensive and defensive line first string. He had at one time told me he would rather die playing football then not play at all. By the way, he is a twin, has a little brother and all my kids are very tall. Off the charts tall. Not sure about Marfans. My family and my husband and his family are all, also tall. So my son at 15 is over 6'1" and weighs in at 175. His twin is about the same size, just a little taller. His twin has astigmatism, but he does not have any eye issues. (My husband is 6'4")

I am just not sure what to do about the sports thing. Is it that much more dangerous for him? Does it greatly increase his chances of problems? They say not to do contact sports or competitive sports. So, is it like saying don't drink diet soda because it can cause cancer? Or is it more like don't run your car into that wall if you want to live?

Just want to make the most informed decision we can. Good news is he has a shoulder injury that is preventing him for playing for 6 weeks right now, so we have time to make a decision. Especially since the first game of the season, against their rival team is in 4 days.
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If they say not to do contact sports, then that is your answer. It's the not driving into a wall if you want to live. Pediatric Cardiologists do everything humanly possible to NOT restrict kids because they understand how hard that is on them. Only a small percentage of kids with CHD are under restrictions. Talk to your son's PC and find out what kind of activities your son can do. It will help all of you to stay focused on keeping him safe. Teens especially feel they will never die, unfortunately, that's not the reality. More children die each year from forms of CHD than ALL children combined who have been diagnosed with all forms of cancer.   That's a staggering number. This will be hard on your son, but there are worse things in life, even though he doesn't think so. As far as Marfans goes, if you are seeing a cardiologist, he would probably already have considered and ruled out that Syndrome. Take care    
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If they say not to do contact sports, then that is your answer. It's the not driving into a wall if you want to live. Pediatric Cardiologists do everything humanly possible to NOT restrict kids because they understand how hard that is on them. Only a small percentage of kids with CHD are under restrictions. Talk to your son's PC and find out what kind of activities your son can do. It will help all of you to stay focused on keeping him safe. Teens especially feel they will never die, unfortunately, that's not the reality. More children die each year from forms of CHD than ALL children combined who have been diagnosed with all forms of cancer.   That's a staggering number. This will be hard on your son, but there are worse things in life, even though he doesn't think so. As far as Marfans goes, if you are seeing a cardiologist, he would probably already have considered and ruled out that Syndrome. Take care    
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Thanks so much for your answer. It was a hard pill for all of us to swallow. We did go for a second opinion and the doctor originally told us also no sports. But, then later called me and told me after doing more research and further looking at his test results that he felt fine signing off for him to play football this season and then do a recheck. He stated that the dilation was not as bad as we were originally told. He also stated that he had been to a conference about this specifically. At the conference the cardiologist giving the talk asked if anyone had experienced any type of rupture as the theory suggests. He kept saying that all of this is based on theory that they may be like Marfans syndrome because of the tissues in the valve. They really don't know though. So we all decided to let him play the last couple of games of this season and recheck him. Also we were advised no isometric exercises (weight lifting) due to the blood pressure rise.

He stated that Arnold Schwarzenegger just had surgery for this exact same problem. That was interesting to me.
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I was glad to hear this news for all of you. It really is hard to try and restrict a teen (been there, done that....) Thanks for the letter. keep in touch.
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My son was born with bicuspid aortic valve 15 years ago.  We were sent home from the hospital and he began having problems soon after that.  While in contact with hospital nurses, he got worse and worse until we ended up in ER.  It was a close call for him as his liver and kidneys had shut down, and he ended up in NICU for 10 days.  He went through a balloon procedure and two more before he was 7 months.  However, the third one did not yield any improvement and we have been just monitoring him ever since.  Now one would never know that he ever had anything wrong with him.  Like your son, he is very athletic and currently playing football.  He is doing well at the backup quarterback position.  He has not peaked out in physical maturity yet, so is small right now, even though we are from a tall family as well.  He's 5.9" 120 and can't seem to gain very fast right now.  The only restriction he has  is no weight-lifting over 50 pounds, similar to  what your doctor advised with the isometric exercise restriction.  However, when some patients are on certain medications (blood thinners, etc.) the docs often restrict the contact sports.  All is going great for our son and he will not need surgery until he is into his 40s or 50s more than likely.  Good luck to your family!
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