No one has answers for my daughter

[ma23peas]

Background: Normal, high energetic otherwise healthy child (may have had one antibiotic in her 9 years)...comes down with a croup like sickness 8 weeks ago.  Normally, her past croup infections have all responded to steroids (although she hasn't had one in 4 years)...this time even on inhaled steroid, prednisolone and eventually decadron..her throat continued to close off...she was bedridden for 10 days with no energy and lost complete use of her voice for 6 days....the day after her voice came back she started experiencing 'jumping' pains...it would start the minute she woke up and last for 10-15 seconds then migrate to another part of her body, they are not limited to joints...she was having as many as 150 a day....her energy level is shot..she tires out from the least bit of exertion...she has episodes where her heart rate will go up to 140 for no reason then jump back down to low 70's within a couple of minutes...she developed an all over body rash that was very hot to the touch, but not itchy..the following week she developed a rash on her cheeks and the doctors ruled she had parvo virus but this started 6 weeks after all this began and they decided it was not causing the migratory pains.

What we've had tested

CBC (3x...last one shows some anemia, all others normal)
Mono (negative)
Strep ASO (91)
Lyme (not sure if it was western blot..but negative)
Thyroid (normal)
Diabetes ( normal)
Nerve conduction test (normal as are all neurological strength tests)
B12 normal
Folic Acid normal

No redness or swelling with these pains..just constant..as of the past 2 weeks it seems as though they've gone down in number to about 75 a day but they're stronger...the past three days her heels are excruciating to stand on in the morning.  The rash she had 2 weeks ago from what they think was parvo is still visible and her palms look very bright red/white splotchy...very noticeably abnormal.  She is constantly tired all the time..although we've seen 4 specialists since everything is coming back normal, they say she's fine...I am the mother watching my otherwise highly energetic can't keep down child have severe pain at times that drops her to the floor crying...she has not looked healthy for over 8 weeks, eyes are droopy and she just can't get herself moving....the rheumatologist is running a lymphocyte test that has not come back yet...

My questions...would the steroids have kept her body from producing antibodies to the strep/mono so that maybe she did have those and the test was false?  At 8 weeks would it be worth it to retest?  She is taking naprosyn suspension 2x a day but it does not so far seem to be cutting down the pain...they've (neurologist/rheum) have ruled out neuropathy and rheumatic causes...

ALL this started with that weird 10 day illness around Christmas...she had sharp stabbing pains on the side of one her kidneys today that made her cry and crumple up..this child is our toughest child and has taken bad falls in gymnastics that she never balked at...something is going on and the doctors are just saying let it run its course...we have for 8 weeks.

Help make sense of this..

[kat2279]

Hey your daughter seems quite sick and i'm really sorry to see that. But my best bet  is that she may be suffering from a medical condition called Lupus. Lupus is an autoimmun disease, whereby the immune system attacks itself by attacking its cells causing extreme fatigue, pain, unusual rashes especially on the face appearing butterfly-like in shape. Ask the doctors to check for this.

[laurie1111]

I'm not sure this helps but my daughter was just diagnosed with rheumatic fever so I've been looking everywere for information.

One post I read was a man with rheumatic fever but tested negative for strep several times. They finally attributed it to throat losenges he had been using for cough.

[alagirl]

Ok, I have a few ideas.  First though, I would have her seen by a cardiologist.  She could have had a strep infection that went undetected and damaged her heart.  She could also have myocarditis.

If she has had chickenpox before, you might check to see if this is shingles.

Here too, is another post about a young person with symptoms that have remarkable similarity to your daughter's:
http://www.medhelp.org/forums/cardio/messages/33416.html

Another possibility: Neisseria meningitidis (bacteremia and meningitis)

And I'll just throw out the names of some other issues you could check:

sepsis
cardiogenic shock
thyrotoxic storm
Paroxysmal supraventricular tachycardia
pulmonary embolism
abdominal aortic aneurism
hypertensive heart disease
toxic megacolon
aortic dissection
acute pancreatitis
aspiration pneumonia
Diabetes insipidus
Glucose-6-phosphate dehydrogenase (G-6-PD) deficiency
addison's
beriberi
Autonomic hyperreflexia
Aortic coarctation