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kli Dealing with pericarditis from a care giver's stand point
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Incessant Recurrent Pericarditis

Sep 27 2011

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. 

Comments (3)Add Comment
written by Hazeldee, September 28, 2011
This sounds so much like my case. Almost 2 years for me too and haven't been able to get off the steroids yet. I have found that following an anti-inflammatory diet like this one: really helped me get some energy back and lost some weight. I too gained 40 lb on the steroids. I now am 20 lb overweight for me. Cutting carbs and sugar is big. They're what put on the pounds. And sugar is bad for inflammation.

I am so sorry she is having to deal with this at such a young age. I hope that she can overcome it and live a normal life. Hang in there. I will be thinking of you.
written by kli, September 29, 2011
Thank you so much, it is so great to have support and input from others. She doesn't drink sodas, she is on a very low salt diet and does pretty good considering. I am trying to get her to do some walks with me in the evenings, maybe when it starts cooling off more she can. Heat bothers her alot. Thanks for the link information, I will sure check it out. I am very thankful she is not on steroids anymore, at least that is a positive. Of course steroids are bad for anyone, but they worried with her being on them too long of the effects on her growth due to her age. I am sure anxious to hear about how your hydrogen treatment works.
I will remember that about sugar, I try really hard to limit her, but sometimes that is almost impossible. And I don't want to make her feel bad about herself, she has enough to deal with as it is.
Thank you for the encouragement and helpful information.
written by Helpformygal, September 21, 2013
Oh my! It's like I've written the post abOve. My 14 yr old daughter also has had undiagnosed (until 3 months ago) pericardial effusion for 2 years - given symptoms etc. I'm wondering... Have there been any positive changes given this was posted in 2011?

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