Pediatric Heart Expert Forum
Not being taken seriously
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Questions in this forum are answered by pediatric cardiologists, cardiothoracic surgeons and anesthesiologists from The Children's Hospital of Philadelphia. This forum is for questions and support about pediatric heart problems, symptoms and topics such as heart murmurs, palpitations, fainting, chest pain, congenital heart defects (including management and intervention), fetal cardiology, adult congenital cardiology, arrhythmias and pre-participation athletic screening.

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Not being taken seriously

My daughter was born last year with a CoA (repaired 23 days old), a BAV, and small but functioning Mitral Valve. On the echo done after surgery they discovered she had heart failure and a moderate sized ASD. She took Lasix for 2 months and Digoxin and Enalapril for 10 months. I am very concerned about her weight 1yr and 16 lbs, her feet turn blue when her legs aren't bent in any way, she has colds that last for 2+ weeks at a time, has rapid breathing at times and her heart beats out of her chest at times even when she is sleeping. Her doctors say that feet, weight, illness have nothing to do with her heart. (The breathing and heart rate are new.) I have had her thyroid checked and it is fine. If this isn't her heart then what are the other options? What do I need to do to make them take me seriously? I feel like they aren't listening to me since I don't rush her to the doctor every time she coughs. (Mother of 3) Last what does a residual cardiac defect mean? She has the BAV and depressed lv function listed on echo report as residual defects. Thanks
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773637_tn?1327450515
Dear Anolis,

Without evaluating your daughter, I cannot say how much of her symptoms are related to her heart vs. not.  I will say that I am a firm believer of parents knowing their children well, and do feel that it is important to listen to their concerns and address them, as best as possible.  Therefore, my feeling is that if you are not getting the answers or the care for your daughter that you believe is needed, it is certainly reasonable to obtain a second opinion.
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Jeffrey R Boris, M.D.Blank
The Children’s Hospital of Philadelphia
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Marie M Gleason, M.D.Blank
The Children’s Hospital of Philadelphia
Philadelphia, PA
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