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Highest # cases idiopathic chronic pericardial effusions

Hi, my otherwise completely healthy daughter had a massive pericardial effusion with tamponade and large pleural effusions this summer. She underwent emergent pericardiocentesis which drained 800 ml of concentrated blood (hct:38). Another 500 ml serosanguinous fluid drained in the next few days trailing off into scant but bright red blood. She relapsed within a week without treatment. Corticosteroid blast stopped the effusion completely but rebounded into a large effusion within 3 days of discontinuation. A longer dose of steroids plus ibuprofen and colchicine and a long taper have kept her relatively stable, but 3 months from the start, she has a slow growing loculated effusion which is currently 1.4cm. Our cardiologist wants to discontinue colchicine and if she has a recurrence, to perform a pericardial window. We feel that it is too early to perform surgery and are looking for a second opinion. We also feel pretty underwhelmed by our local pediatric rheumatology dept. We have been bounced from cardiologist to cardiologist and to rheumatology and back so many times--! Our question is, where would be a cardiology center that handles the most cases/and-or has the most integrated team for diagnosis and treatment?
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773655 tn?1340652799
It sounds like your family has had a tough time dealing with this, and unfortunately chronic pericardial effusions can be quite difficult to treat.  Steroids can be very helpful in treating this condition, which in most cases, are idiopathic in origin (or presumed from some viral inflammation of the tissues).  There would be no specific referral center for this type of problem;  all pediatric cardiologists have to deal with this at some time, and the more patients that are seen at an institution, the more likely they will have had experience with a variety of cases of pericardial effusions.  The timing of doing a pericardial window is an individualized process, and if the patient is stable, one could certainly wait at least 3 months or more to see if the patient is proving to fail all medical therapy.  Remember the pericardial window just drains the fluid out of the heart sac so there is no tamponade effect; the fluid then goes into the pleural space, but it is a safer situation.  If you are seeking a second opinion, it would probably make sense to go to one of the largest centers near to where you live.  You can check US News & World report ranking of the top 10 pediatric cardiology programs in the country.  You would do well at any one of those.  Good luck.
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