Elite Athlete restricted from sports

[Djalmo]

My 16 yr old athletic son was diagnosed with dilated cardiomyopathy and restricted from activities. He had a routine EKG, abnormal, echo, abnormal, referred to pediatric cardiologist. They confirmed echo results. Holter monitor, stress test, bloodwork all normal. Restricted from sports for a month and returned for echo which showed slight improvement. Dr continued restrictions and said to return in 7 wks to determine if he can play fall sports. I don't want to just wait and see. I want to do something. Should we get a second opinion from someone specializing in athletes?  I don't feel like we have a first opinion yet. His EF is 45-50%. His fractional shortening went from 25 to 27 in last 2 echos. Any advice for a worried mom?

[Flycaster305]

I have no experience at all with your son's cardiac symptoms and treatments, but have a great deal of experience with my own cardiac issues.  That said, I raised active/athletic kids, and was one way back in the middle ages.  I recall when a child had a leaking, not ruptured spleen from an athletic event, and promised the surgeon he would go home and rest for at least two weeks.  About ten days later, we found him wrestling with his friend and it became a problem.  

If he really will rest and refrain from activity, waiting would make sense, but if he is going to accept a challenge, decide to test himself, getting a second opinion makes all the sense in the world as it might make him understand what a serious issue is facing.  That said, an EF of 45 -50% isn't that high for a sixteen year old.  Question:  did they test for Marphon's Disease?

Keep us posted.

[TheLightSeeker]

Children and adolescences who are diagnosed with dilated cardiomyopathy, are not allowed to participate in competitive sports.
For the ones, like your son, without any heart failure signs, he may be able to participate in recreational activities, when  the level of activity does not cause overexertion of any sort.
The key here to understand is that a Cardiologist cannot and will not -under any circumstances- just because of  normal results like you posted, which by the way are  taken in a controlled environment,  allow ANYONE recently diagnosed with DCM to return  to Elite or competitive sports until he or she is certain that it is absolutely safe to do so.

I personally do not see anything that warrants a second opinion at this point, however, if no cause has been identified yet, and determined to be idiopathic, I would suggest both parents and siblings to be tested as well for DCM, to help determine if there's a genetic cause (familial form).

Your son's health and well-being is of utmost importance and please don't lose sight of this at any time.
Aspirations and dreams may influence parents and children alike to the point of losing objectivity in critical situations.

This is not intended as a substitute for medical advice

Best wishes to you and your son.
Niko

[ed34]

I assume that the blood work and echo results ruled out other issues such as abnormalities of valves etc. With his EF increasing so much over just one month, then I am also assuming it was due to a viral infection? but maybe they have said something different. Believe me, when the ventricle is enlarged so much that it can no longer pump efficiently, letting it rest is the best policy. You certainly don't want to end up with a lower EF again. Three months is usually enough time when due to viral infections, so patience is certainly a virtue here and I don't believe (personally) that a second opinion is necessary. If there was no improvement, then I would consider that option.

[Djalmo]

Thank you for your responses.  I am worried and want to be proactive but I would never jeopardize his health against recommendations.  It is just so frustrating.  I was told it is not a virus, it is not athlete's heart and they have found no cause.  He has no symptoms.  This was first discovered at a free screening of athletes that the local hospital did for the community.  

If he is sidelined from sports than we are certainly glad it was discovered before it was a crisis situation.  But...he has played travel soccer since he was 7 and has traveled across the country playing.  He is also the star of the school football team.  He has been invited to play soccer in Spain next year and he is being looked at for college scholarships.  Two wks ago his team played in the state finals and he could not participate.

And yes, he actually was evaluated by a geneticist for Marfans about three years ago but they said he did not have it.  We were referred due to his size, very tall with long arms.  As I understand it, Marfans effects the aorta?  His aorta is fine.

All four heart chambers are dilated.  The left ventricle is 62mm with global hypokinesis.

[Flycaster305]

Heart problems trump almost everything.  With all four heart chambers dilated, I'd get certainly a second opinion from perhaps a teaching hospital, such as Cleveland Clinic, John's Hopkins, or your state's teaching cardiac school.  
I'd sort out your son's health problems with a second opinion.  He already has a diagnosis that will follow his ability to get a scholarship.  An expert diagnosis might save his life or give him a clean bill of health.  I hope you get a second opinion and also hope you let us know what was said.  Keep in mind that this is a peer to peer board, not an expert board.  Best wishes.

[skydnsr]

I think Flycaster has a good thought about getting an evaluation at a major heart center.  If it were my son, I would want the top experts in pediatric cardiology to be looking him over, from top to bottom.  One of the things I would want to hear a second opinion about, from a true expert, is the Marfans.  Possibly your son has some of the features of Marfans but not enough to clinch the diagnosis.  In that case, certain things might need to be monitored in the future, like the aorta.

Please don't feel like letting your son rest is not doing anything.  That is an intervention in itself, and it does seem to be helping.

[Djalmo]

Well after 3 months of rest, the latest echo showed no improvement, actually worse. We have scheduled an appt with a sports cardiologist that specializes in athletes but he can't see him until he turns 17, which is another 2 months.  The current doctor is allowing him to be the place kicker (only) for the football team and to play golf. No soccer, no wide receiver, no lifting weights. He has started taking lisinopril. We are feeling pressure from coaches, etc to get a quicker second opinion so we are also going to see another cardiologist in town.

[skydnsr]

Thanks for the update.  Sorry he's not doing better.  At this point, I would be looking for a second opinion, also.  In fact, I believe that may have been recommended above.  But, and please don't take this the wrong way, the main concern is his health and how he can be as healthy as possible for the rest of his life -- not sports, not anything else.  As a mere bystander, I don't mean to be presumptuous, but I would have a goal of getting him healthy and obtaining for him the expertise he needs to be able to live a long life with good quality of life.  If he can ever play sports again, great.  But more is in the balance now than just his ability to play sports.  Sorry it's come to this.  We will be wishing for things to take a better turn, and they still can.