The Non-Stop Pericarditis

My daughter, who is now 14, has had pericarditis since she was 12.  She was not immediately diagnosed, it took me 6 months and several visits to our local emergency room and her doctor and finallychanging doctors for a 2nd opinion for them to diagnose her.  By that time, she had a significant amount of fluid that had built up around her heart and was causing heart failure.  It was so very hard and frustrating to be a mom and have something wrong with your baby and no one could find it.  Watching her go through test after test and not finding anything.  Her first doctor just finally said it was anxiety and wanted her to see a counselor.  After that, I make an apointment with a different doctor.  He did an ekg (to my knowledge, nothing showed up on it), and then an echocardiogram.  During the echo - the tech made a slight gasp, at that time both my daughter and I knew she had found something.  We were sent immediately back to the doctor's office, where he told us what she had.  He sent her to a nearby city to see a pediatric cardiologist.  During the first year of her pericarditis, after being diagnosed, she had problems with fluid build up.  The cardiologist never did any testing on the fluid at all, he put her on lasix to drain the fluids.  She was also taking indometacin.  After the fluid was gone the first time, he took her off all medications.  It immediately came back, the pain, the fluids.  At that time he put her on steriods (the awful awful steriods).  Before my daughter had this, she was a cheerleader, played sports, and loved to swim.  She was a very healthy kid, after the steroids, she gained 40 lbs. and cannot seem to get the weight off now. 

Now it is two years later, she still has pericarditis.  She cannot stop taking medication or it comes back immediately.  She currently takes 1200mg ibuprofen, colchicine and a stomach protector (zantac).  Her life has changed drastically. 

As her primary "caregiver" I have learned alot from speaking with others who suffer from this disease.  It helps me tremendously to know how others deal with it, and what is and isn't "normal" and how it feels, etc.  I know this helps me to help her more, by knowing from others that have had this, and still have this.