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Bicuspid aortic valve insufficiency
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Bicuspid aortic valve insufficiency

My son starting seeing a pediatric cardiologist when he was 3 for a heart murmur at which time we were told he has a bicuspid aoritc valve insufficiency.  His heart was on the upper side of normal and had minimal to moderate leakage.  He has been seeing his cardiologist each year for the last 3 years and up until his last appointment 2 weeks ago he had remained stable with no changes, he has also been asymptomatic.  When we went for our appointment 2 weeks ago his the leakage had increased to moderate and his heart size had gone past normal for his size and age (she said he should be at 42 and it was at 45). His cardiologist sent his echo to the board of surgeons who thought it would be best to do a repair of this valve but then decided to put him on enalapril for 6 month and then do another echo to see if the enalapril is helping.  Is it likely that these changes will continue to increase or will the enalapril keep his heart functioning well enough that he will not need surgery?  Also he wants to do wrestling in a month or so (not much contact as it is for kindergarden - 2nd grade kids) is this something he should be limited in?
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Hello and welcome to our site. I really wish I coul answer your questions about the enalapril, but I have no experience with this particular drug. You may want to jump over to the EXPERT pediatric heart forum where a doctor can answer your question. This forum is primarily a support forum for parents; some of the more technical issues need to go onto the EXPERT forums. Again, I'm sorry that I cannot answer this question for you. Fell free to come bvack and let us know how your son is doing. Take care
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Hello, Thank you for your response to my question, I did find the Expert forum and asked my question there also.  I also got a response to my questions that really helped my understanding of my son's heart condition and his medicine.  I will keep posting how my son is doing.  I am so thankful to have a website like this for support - it is scary knowing my son's little heart is not working correctly and not know what the future holds for him and his treatment.  Thank you for your support!
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I'm so glad you came back to our forum, Tandi! Most parents share your fear of the unknown; we have all be there! At this point, in my life, I am a grandmother, having raised a daughter with severe heart disease. Sometimes you wonder if your child will ever make it to adulthood; many of them do. Keep in touch! :)
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Hi.  I just wanted to write to tell you I also have a son who has a bicuspid aortic valve, and moderate regurgitation.  He was diagnosed at 8 month's of age.  We did a trial of enalapril but he has since come off it because he wasn't feeling good on it.  We haven't made it to the surgery part yet, but I can be a support if you need to chat.  The expert forum is a great place to consult.
Take care
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Avatar_f_tn
Hello.  Thank you for the support!  My son seems to be doing good on the enalapril and we go back to his cardiologist in May for a cardiac MRI because the surgeon wants a better look at his heart. So if the meds are helping and the size of his left ventrical goes back to normal then they will wait a little longer on the surgery.  I hope your son is doing well!  How old is he?  It is so nice to have others to talk to who know what we are going through! I am so glad I found this forum!!
Take care!
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Avatar_f_tn
Hi Tandi260,
I think this forum is awesome.  My son is 11 now and doing good.  He currently has an exercise rextriction of no contact sports.  we live in a small town and there isn't to many no contact sports.  He is playing hockey but this year had to play down a level because he isn't allowed to get checked.  He didn't really have any changes to his heart until 2 years ago and we tried the enalapril but my son developed the dry cough from the meds and it made him feel unwell for awhile....So he went off it and hasn't been on anything.  He complains of the occassional chest pain or shortness of breath but for the most part he feels well.
If you have any question please don't hesitate to ask.  
Take care!!
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