anomalous right coronary artery

[cindybiddy]

My 9 year old grandson was diagnosed with this today. We were told that his right coronary artery is in the 1 oclock position and passes betwwen the pulmonary artery and aorta. Ths ws diagnosed through a ultra sound done following an abnormal EKG. The EKG was performed after complaints of chest pain with out activity and his lips and chin turning blue during activity. He is also ADHD and has been on Stratera for  four years. We were told that he can die from this condition, but that the pediatric center we took him to doesnt reccomend surgery  as it can also be fatal. They had no recomendatins regarding what we should do other than keep off his medication. I asked if he should receive a mild seditive to help with the hyperactivity, but again they said they didnt have enough experience with the combination of the two conditions to make a recomendation. She said they just dont know. They want to do a stress test in three weeks but to keep him calm in the mean time. How do we keep ourselves calm? This was all dicussed in fron tof him. He sked his mother if it hurts to die...We really need help now.

[Douglas Bogart, MD]

There are reports of sudden death with exercise in cases like your grandson, and you should take him to a large center where they have a large experience with such problems.  I have had adults who have had bypass surgery for this condition with excellent results but I  don't know about a 9 year old with ADHD.  This will require a center with a large experience.

[Douglas Bogart, MD]

The Mayo Clinic has an excellent congenital heart center with excellent cardiologists and surgeons.

[cindybiddy]

Can you recomend a center? The only one I have read about is the Mayo in MInnesota, but Although the Mayo is large I'm not sure about this center...