Bicuspid Aorta - 8yo

My 8yo son was diagosed with a bicuspid aorta at the age of 2.  We were told that it was nothing to be concerned with and just to monitor it on a yearly basis untl he was around 10 or 12.  This would give the drs a good baseline of his measurements.  We did this for 4 years and everything seemed fine so we let it fall by the wayside.  Occassionally if his has been really sick and or taking a lot of medications we will see some blueing around the mouth and nose.

For the past year off and on he has complained of stomach pains around the periumbilical area.  Then this Thanksgiving he woke with a stomach virus.  The virus past but the stomach pain remained.  We have had numerous tests and labs and nothing has shown positive.  During this time we have seen some blueing during these episodes.  The only thing that controls the pain is demerol.   The past couple of weeks the pain has deminished to only after meals and not after every meal and generally when he lays down at night.   We have had headaches with these episodes as well.  

We have a strong history of heart disease and congenital heart defects.  My concern is that this may have something to do with his aorta - such as the abdominal aorta area.   When I have presented this to the doctors and surgeons we have spoken with they pass it off.   We do have an appointment with the cardiologist in a couple of weeks for our routine chck up.  

My question here is are my fears reasonable?  Has anyone else had stomach pain coupled with their heart condition?  Also, what are some questions that I can ask my docotors to make sure my son is being checked out adequately>

Thanks for your help

[pacecar]

Is there anyone with any ideas?    Should I post on the pediatric forum instead?

[healingheart]

I was first diagnosed with an bicuspid aortic valve at 32 after being treated for a stroke caused by a large PFO.  At the time I was also disgnosed with an ascending aortic anyerusm.  I recently had the bicuspid aortic valve replaced and the ascending aortic anyerusm repaired (11-7-07)  

My first question would be at what level is your son's bicuspid aortic valve functioning?  I had severe stomach pains under my sternum that lasted sometimes 5 minutes and sometimes longer.  as my valve began to decrease in functioning, my symptomsin increased....shortness of breath, fatigue, coughing, chest pains, etc, however I was never blue around my mouth.

Your fears are reasonable, and I would insist the cardiologist do an Echocardiogram and a chest CT with dye contrast.  I am not an expert, but these are the two tests I trusted for the best information.  If you have any questions, I will be happy to try and answer them.  I hope this helps some.

[Momto3]

Check out valvereplacement.com.  There are a lot of people on the forums who have BAV.  A number of posters have children with valve disorders.  I think you'll find it a comfortable place with a lot of friendly and helpful people.

Best wishes!
connie