PLEASE HELP

[Jessi0404]

Hello, I have a question that has gone unanswered by my daughters doctors. My daughter is 7 she was diagnosed at birth with a mild pulmonary valve stenosis. She had a couple of episodes of cyanosis when she was young but we have had no problems since. Now that she is 7 and has a difficult time breathing (always breathes hard even when resting) she is now complaining of chest pains that get worse when she lays flat. (6 days now) and stays very exhausted ( even with 10 hours or more of sleep EVERY night) We have been in touch with the Peiatric cardiologist and she has an appointment for tomorrow. We have had to take her to the local ER twice in 3 days for EKG both have come back normal. They have not done an echo or chest xray at all and we are super worried. We were under the impression that his disorder was mild and would not get any worse (says the cardiologist) Could this be symptoms of a worsening condition? Should we be worried?

[Jessi0404]

I have a hard time dealing with the "chest pain" issue, as this child could have the swine flu and never complain about a thing.( When she complains of any pain it likely that she is REALLY in pain.) I work in the healthcare area and understand the warning signs that send up the "mommy flags" and it's hard to understand why she has had to suffer with this for almost a full week now. We tried tums, to ensure that it was not heartburn or reflux. I have listened to her lungs and have not heard any whistle, wheezing, cracking, or bubbling at all, and Restricted activity to ensure that it was not due to over exertion. Now we are just waiting for them to do what we can not do from home. It will be a relief to know that everything is functioning properly at this point. We will keep you all updated as we are informed of any new developments. Thanks for your time. I truly appreciate it :)

[ed34]

I can certainly understand your concern, but it really isn't worth jumping to any conclusions. There are a number of things which can cause shortness of breath and discomfort, some not so serious, some more serious. I think it certainly does warrant some tests until the correct diagnosis can be made. I certainly would keep pushing to ensure they do the right tests, especially an echo and x-ray. It could be unrelated to the valve issue and be something totally new, so no preconceived ideas is the best approach for you and your Doctors.
I really do hope your Daughter gets the right treatment and recovers soon, it breaks my heart when children suffer. Can you please keep us informed as to what they do, and what they find?  It would be appreciated.