fluid on the heart

[hudson1]

My daughter is 11 and her new Dr heard fluid on her heart. We haven't had test ran on her yet so I have no clue about this problem. She got very ill in 2006 and they never figured out what made her body crash and her almost death. Her eye lashes in the middle of her left eye have fallen out 2 times for no reason. Head aches and dizzy spells at the same time.  Her knees hust if she sits to long. Does any of this make any sense. Please help.

[cmt51597]

if your daughter at 11 could not stand up and they wanted to release her from the hospital--if it was my daughter I would not let them.  

Sounds like you might have to start the whole cycle of testing over--so be it.  Just explain to your daughter it's necessary.  Also you might think about having an attorney on hand.  There might be a chance of malpractice somewhere-- a missread diagnostic report or not performed properly.  

Maybe her leukemia is in remission.  Maybe where you were they weren't using the most up-to-date diagnostic tests or she may possibly have a form of leukemia that has yet to be identified.  Sounds to me like something is in remission-- how can you have such extreme symptoms and then be A-OK? That just makes no sense--- I'm not a doc, but that just does not sound right.  Sounds like you are getting the run-around.  If I were you I would get copies of every diagnostic test (EVERY!!- blood cultures, CTs, etc.) give copies to your lawyer and get the new doc or a second doc to go over each report with a fine tooth comb as well as yourself.  Have the doc correlate all the reports and see how or if they correlate and if they do correlate if they point to something that they initially missed.  Even the CDC can make mistakes-- they are human too.  And was it the CDC that actually carried out the test- not likely.  There is always the chance of technician error.  


They are saying CHF-- that is very unusual for an 11 year old.  Especially if she didn't have any rounds of chemo which can decrease heart function.  Do you have family history of CHF?   She needs the pediactric echocardiogram to r/out CHF.  You should go to a children's hospital for this.  It's hard to find a good pediactric echo tech in an out-patient environment.  Make sure the echo lab is accredited for pediactric echo.  you can look for accredited echo labs by going to icael dot org and searching for accredited labs.  This is important so you know the tech knows what they are doing.  

So, you still don't know what happened to her..you need to keep asking questions and prying until you get concrete answers.  if that does not get a response....get the lawyer to get you a response.  You can sue for medical incompetence or threaten them.  

To be sure and to correct for any previous technical errors, have all the previous tests and any additional one's (including the echo) done again.  If they come up positive for leukemia-- you have a good case on your hands.  Once the new doc reviews all the charts and gets all the reports from all the re-done tests, make sure you follow up vigilantly with him.  Did the results correlate?  Do the new tests reveal anything previously undiagnosed?  How long likely has it been undiagnosed?  If everything still comes up negative and they still say she is OK, search for a specialist that deals with her types of symptoms.  My feeling is on this, something was missed somewhere along the line.  Somebody probably misread something or didn't read closely enough.  For them to say, she is OK, good to go and sorry we don't know what happened-- that is just not acceptable to me and I'm surprised the CDC didn't press harder for more answers because this could possibly be a new type of childhood leukemia or possibly some other new disease.  

1. Do as outlined
2.  Keep ironclad records (get and keep safe copies of all of the reports- if you can put copies in a safe-deposit box)
2.  follow-up, follow-up, follow-up with the new doc
3.  Keep pressing for answers until you get one...don't let them brush you off-- it they do threaten legal action
4.  If all else fails, write letters to your senator/congressman telling them you want an answer from the CDC
5.  Every day pretend you are in her shoes and what it must be like-- this should give you all the motivation you need

[hudson1]

When she was at the children's hospital in Florida they did a bone marrow test on her and a lumbar puncher. I was original told she has either congestive heart failure or  leukemia. This was because I made them do a CT and a CBS in the Naval hospital ER. This was after a ped dr brushed off her head aches and dizzy spells for 8 months. A week later I took her in to the ER because she had a temp that spike to 104 from 102 in less than 30 min. I did demand, that was a Friday they told me it was  a sinus infection and follow up on Monday. By Monday she couldn't stand up and it hurt her if you touched her. I was sent home and told it was a virus that they had just treated and this was the hump part and to give her pain meds, follow up in 2 days they took more blood. By Wed she was so tired and when they took her O2 I knew why, it was 85 sat and her BUN was almost 31.She had fluid in her lungs and yeast. That hospital sent her to a Childrens hospital that gave her a blood transfusion IV rocefin and some other antibiotic for 10 days did every test you can think of and nada. The CDC even came and they found nothing. We did a year follow up and they all told me she was great. When I told them I wanted to know what caused it I was told they didn't know. Her new DR wants to run blood test but wants to read her other drs charts from both hospitals. We moved and have another DR.That will be on the 18th.

[cmt51597]

Has your doc ordered an echocardiogram for her yet.  If not, I would highly recommend one.  This is one of the most simple and straight-forward ways to rule out fluid on the heart aka pericardial effusion.  Is her breathing restricted/is she short of breath.  This is a possible sign of significan fluid around the heart and can become tamponade- a very serious condition where the right side of the heart cannot fill and can be fatal.  

I don't know about the eye-lashes falling out.  Has she been tested for childhood luekemia?  Why didn't the docs follow up with tests to get to the bottom of this?  What are they waiting for to do the tests-- a sign from above?  You need to start to get on them or, at this point, find some new docs.  Where is her pediatrician in the equation?  Sounds like you need to find a new one yesterday.  Did she get any MRIs or CTs?  Or at least a chest xray? -this would be another way to check for fluid around the heart, but she would still need the echo to evaluate the situation more closely and rule out any restricted filling of the right side of her heart.  

I have a hard time making the connection between the knees and the eyelashes but I'm not a doc.  You should search around on the web to see if there are any connections here, but this should have been done already by her pediatrician.  You need to start DEMANDING answers.  For the headaches I would recommend an EEG be done on her.  This is different from an EKG.   The pain in the knees sounds quite worrisome.  Pain in bones and joints is a common symptom of leukemia. This pain is usually a result of the bone marrow being overcrowded and full.  Go to google and do a search for "childhood luekemia symptoms" and you will find some answers there.  Given this, you should get her tested for childhood leukemia pronto and if she has it, she needs intensive care immediately-- this means chemo therapy.  Do you have any children's hospitals near you?  If not, you need to start looking where the closest one is and pick one.  

You need to get on this right away.  Either get an appointment with a good pediatrician tomorrow or take her to the nearest ER or children's hospital (preferable) tomorrow.  You need to go! go! go!-- this is your daughter's life!  Start dialing the phone now!!  I just can't understand why comprehensive testing has not been done.  Get it done this time and keep vigilant until it is.  Your duaghter is too young to fight for herself, you have to fight for her...that is your responsibility as her parent.  Go!- you have a mission!!