Pediatric Heart Expert Forum
Where do we go from here???
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Questions in this forum are answered by pediatric cardiologists, cardiothoracic surgeons and anesthesiologists from The Children's Hospital of Philadelphia. This forum is for questions and support about pediatric heart problems, symptoms and topics such as heart murmurs, palpitations, fainting, chest pain, congenital heart defects (including management and intervention), fetal cardiology, adult congenital cardiology, arrhythmias and pre-participation athletic screening.

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Where do we go from here???

This is my first post.  I dont know where to begin.  My child has been diagnosed with PVCs.  He is 11yrs old and was diagnosed 5 months ago as a result of being admitted to the hospital emergency room for a swelling of his left patelal bursa, coupled with a fever of 102-103 that would not break, despite typical OTC medications, for over 24 hours.   He remained in the hospital for 5 days, (3 on IV antibiotics).  Cultures of aspirated fluid were negative for tested bacterial infections.

The attending emergency room doctor noted a murmur when our son was first admitted to the hospital.  Prior to discharge the event was further investigated and the resulting EKG  and Holter monitor tests revealed PVCs.
Currently at a Lown level IV. He has been treated with Atelenol and a 30 day steroid  regimen but it did not cure his PVCs. He has had Echogram,  Cat Scan with Contrast,  Familion genetic testing, Cardiac Catheterzation,
Biopsy testing, Stress test, (PVCs were not suppressed by exercise)  Blood testing for viral infections.
Plus mother, father, and brother were all put on Holters and everyone came back normal. All tests have come back negative for the traits they were testing for.   He has been released to resume physical education in school but is with held from competitive sports.  

Continued

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773637_tn?1327450515
Dear John,

Unfortunately, despite the information that you have given me, I cannot tell you your child’s risk.  For our other readers, the Lown grading system is a system of assessment of frequency and severity of premature ventricular contractions (PVCs) that is used in adults.  It has not been validated for use in children, and we do not know what it really means from a prognostic standpoint.  Lown grade IV can be broken into two types:  IV A, which includes couplets (two PVCs together) or IV B, which includes runs of 3 or more PVCs.  There is much more to evaluating PVCs than just how many there are and if they suppress with exercise, including what pattern they have, where they occur in the heart, if they are uniform vs. multiform, and some other factors.  It sounds like there has been a significant amount of testing that has been done on not just your son, but also on your entire family.  I recommend that you be seen by a pediatric electrophysiologist who would be familiar with the evaluation.

I can say that approximately 20% of adolescent males have benign PVCs on routine testing, though I cannot tell if your son’s is benign, or not.  We don’t typically worry about couplets, including the need for medication for them, if they are infrequent and do not worsen with exercise.  We do like to routinely follow these patients with, at minimum, Holter monitoring to ensure that the frequency and severity of the ectopy is not increasing.
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Contiunued

My questions are many, and my concern is deep.  My child is an exceptional scholar athlete who participates in  football, baseball, and soccer.   The doctors keep telling us its a wait and see approach, as they manipulate his medication for 30 day cycles and follow up with holter tests.

I find the waiting and the unknown the worst to deal with.   He has been seen by three different doctors, and at times it appears as though they have differing opinions.   Then they confer and give a concensus recommendation.

What are the statistics regarding children with these types of diseases?

Assuming his condition does not change for the worse but remains the same, what can thes future hold as far as sports and an active lifestyle?

Can they return to active sports (Soccer , Football)?

Can they return to quasi physically demanding  sports (ie Baseball).  

What can we expect as our child enters puberty and adulthood?

Thank you for your consideration.
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My son's case is receiving contrasting opinions from two highly respected electrophysiologists.   Would you consider looking over his charts?  I could mail you a comprehensive package.  
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773637_tn?1327450515
We have a program set up for review of patient information.  Please contact our clinical liaison nurse practitioner, Katie Dodds, at 267-426-5844.
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