hello and thank you for the opportunity to ask questions here.
My son was diagnosed with Epstein s 3 months ago after developing SVT @ a rate of 261 and then vagaling down to 148 in atrial flutter. He has an enlarged atrium( atrium size of an adult heart), ASD and severe tricuspid regurgitation . He is on Betapace, digoxin and an asa daily. My question is what kind of procedure is done to correct this? When do they usually decided surgery is necessary and what kind of general prognosis may he have?
I have been a nurse for many years and know very little about Epstein's anomaly. I have done some research but have not found a lot of info on Epstein's in this age group. He has been cardioverted twice in 3 months for atrial flutter.
While I have certainly heard of this anomaly, I cannot remember the specifics about it, but here goes. If your son is having SVT problems can they do an ablation on him in the EP Lab to ablate the pathway? Can he have surgery to correct the ASD? Is the ASD causing the enlaged atrium? I do not know the prognosis for this anomaly, what I can tell you is what my daughter's Godfather told me (he's a pediatric cardiologist). "I can correct or help 95% of the kids who come to me who have Congenital Heart Disease; the remaining 5% I can't do anything for, they will need transplants to survive." I don't know which group Epstein falls into. It can be really frustrating for a parent trying to find info on something that usually always written about in adults. (been there, done that). Maybe you can take some comfort in the fact that you are reading about adults. Maybe that's a good sign as far as prognosis goes. I can tell you that a PC isn't afraid to tell parents about a bad prognosis on their child; maybe that is also a good thing. If they haven't given you a bad prognosis or told you to :"Take your child home and spoil him, let him enjoy what childhood he has left.", maybe that's a good thing. Keep us posted on how he and you are both doing.
Don't know if this may help any of you, i have a 13 yr old son who was diagnosed with epstines at birth.he was monitored every six months which then changed to yearly appointments. His consultant and heart surgeon from the hospital he attends visited the mayo clinic in America and took my sons files with them. They have now decided to do an op called the cone procedure which he is due to go through at the end of July 2013. Basicaly they are going to try to restructure the valve because the right ventricle has became very enlarged due to blood and fluid been pushed back once it has pumped its way through lungs etc.i will keep you all up to date as things Unfold.
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