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my 2 yr boy has bicupis valve aortic stenosis
hi there



so i just found out yesterday that my 2 yr old son has bicuspid aortic valve stenosis

he's got no symptoms other then a murmur as of right now and acts like a normal 2 to 3 yr old

he's got a 40 out of 100 for the  radiant of i'm guessing constriction

he needs to go back and see the cardiologist every 6 months now to be revaluated

the doctors told us that in almost all cases it get worse

we were kind of hoping it would stay the same and no medical intervention would have to be done but that seems to be impossible for what we have been told

also we were told that he will have to limit his activity to almost nothing in the years to come because his heart will not be able to take it

is that true ??

is there a high mortality rate for BAVS is what i have stared calling it

they started telling us about the cauterization procedure but when will they know if its need ?? or is it better to get it done now so there wont be any permanent heart damage done by the heart over working it self to compensate ??

one thing i don't not understand is they have a ton of things to do for this type of thing why cant they separate the valves that are fused together ??? would that not be the best treatment instead of replacing the whole valve ?

and by what age is it that most children have problems with it is there anything i  can watch for ??

as you can tell i have many things that were not answered by the doctor and am kind of still in disbelief

can anyone help me fill the void of the the unknown ?

and tell me what's going to or could happen in the years to come

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Hi angel,
Sorry to hear about your son I know how hard this must be for you.I am also a mother of a child with aortic regurgitation and stenosis and bicuspid aortic valve.  My son is now 9 years old and is doing good.  He was diagnosed with all of this when he was 8 months old.  We have been going back to the cardiologist every year and in the last 2 years every 6 months.  He has progression of his regurgitation which is now moderate and mild stenosis.  He has had the restrictions placed on him for awhile for no isometric exercises and no contact sports.  My son does play hockey and all kinds of sports but he has learned when to slow down and take it easy  This will be his last year of playing hockey..  There are different progressions of this condition and I think 3 of us parents have shown that through our children.  You have great questions and i think you should print all these questions and call the cardiologist and make another appointment to answer your questions or at least speak with the cardiologists nurse.  I have learned that if I don't remember the question while I am at the doctors visit that i write them down and i bring them with me.  I have called back to our cardiologist the next day with a ton of questions.  There are great parents on here to talk to and you will find this place very helpful.  Hope this was helpful and I would be happy to chat with you any time.
Shelly
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This is a condition that a third of the population is born with, they just don't know until they have someone looking.  My son's ear doctor heard a murmur when he was in elementary school.  The cardiologist named it and said to take antibodics before any dental visit and to get a flu shot every year.  He told my son that he was no different than the day he was born.  My son enjoys basket ball and tennis.  Today he is 28 years old.  My grandmother died of Valve failure when she was in her 50's. They did not know all that could be done over 100 years ago.  In my 50's I was being treated for the "almost pneumonia", but not yet, that did not heal.  I saw a different doctor who did a blood test which showed the problem was with my heart.  I had my valve replaced and I could breath again.  I am now 60.  Because I was young in my 50's they put in a mechanical valve which does not wear out in 15 years like a tissue valve.  Relax and don't upset your son with all this until he is older and asking questions about going to the doctor or taking annibotics before dental appointments.  Write down your questions, go back to see the doctor, and ask!  You may want to get a second or third opinion.  Jan.
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