do any of these symptoms sound familiar to anyone?

[libbybolt]

My 11 y.o. daughter has been having severe headaches, daily low-grade fever, extreme fatigue, nausea, malaise, the distinct "butterfly mask"across cheekbones, bridge of nose and 11 diagnosed episodes of strep since May.  
Various tests (MRI, CT scan, CBC, show this:

MRI: complete opacity of ethmoid sinus
ESR rate:abn low 2
Total protein: abn low 6.2
Globulin: abn low: 1.8
Albumin/protein ratio: abn high  2.4
Immunoglobulin G: low 673
Allergies:  Asymptomatic  - horses, cats, dust mites
Mono: negative

ENT won't take out tonsils, citing "the infection is in her sinuses, not tonsils".  If she makes it through school, she falls asleep in car or immediately when we get home and often sleeps through supper.  Pediatrician prescribed imitrex for migraines but she was taking it up to twice-daily - which is way over amount prescribed, recommended or paid for by insurance.  switched her to Zomig, again she takes it daily.  Seems to stop her headaches temporarily but they return in a couple hours.  I don't believe her headaches are migrainous, no pattern and can occur in diff areas of head, etc.  At the school nurse she will lie down and sleep up to three hours a few times a week.  She runs a daily fever in the range of 99-101. She is so fatigued she is unable to walk up stairs without being winded.  Recently during the season's first snow days, she woke up, had breakfast, went back to bed, slept all day.  she said she was going to make herself go out and sled despite feeling so badly, and even then she could only manage a couple of runs in our front yard before returning inside to bed.  She has very few social commitments she can keep due to being sick. Attended only one football game, has missed several birthday parties.  Daily she has that weird distinct red flush across cheekbones and bridge of nose.  We are awaiting an appt at Vanderbilt sinus clinic to follow through on any abnormalities in sinuses.  She does not complain of stuffy, runny nose or ear pain, pressure, etc.  Doesn't appear classically sinus (from the very little I know).
Today she had a blood test for lupus.  

Can anyone shed some insight on these symptoms?  She is an otherwise healthy, happy, active, excellent student with three siblings in a two-parent upper income home.  But it seems she is becoming discouraged by hearing from the dr's "It's no big deal".  Of course I know they are trying to reassure us it's not a terminal disease type condition (thank God), but she thinks they are saying it's insignificant to them and meanwhile, she's too exhausted or in pain from headache to play or stay in school an entire day.

if any of these ring a bell with anyone, please share your thoughts.  thank you.

[jevo]

google the road back foundation and rhumatic.org they are rhumatic autoimmune sites, you may be able to piece together by looking at other sufferers symptoms, look into antibiotic minocin if it is rhuematic disease, (lupus ,scleroderma rhumatoid arthritis) are all rhematic disease some people believe that thse diseases are because of bacteria in your body. look it up ,it cant hurt can it my sis has scleroderma, very rare auto imune disease, get her ANA antibodies checked also maybe c reactive protien test, a sensitive test which tells if somethimg is going on levels of inflamation in body usually, caz xxx good luck

[oona]

I was also thinking Lupus. Make sure you get copies of all of her tests, sometimes it's also possible to test negative for autoimmune diseases at first. Did they do an ANA test and anti-DS DNA? Make sure you're aware of what testing they are doing.  It might also make sense to start journalling the symptoms, I generally agree that trying a gluten free diet could also be helpful. Hang in there and continues to do research for yourself and your daughter, sometimes the doctors are not always right.

Another thing that I wondered is whether she has been tested for Epstein Barr Virus (EBV)? This virus can cause many problems, but is mostly inactive (asymptomatic) in the general population, though certain individuals can have real issues and it can also reactivate. There is also some research suggesting that Children with Lupus almost always have been exposed to EBV. Ask your doctor if he/she could consider testing for this as well.

I hope you get the answers you need.

Happy New Year and best wishes for a speedy diagnosis and recovery :)

[Nish2011]

I forgot to add that a general physician or and orthopedic surgeon are not much aware of lupus and its affects. A skin surgeon "might know" about lupus. Your best bet is to go straight to a Rheumatologist to eliminate the possibility of lupus.
The main cause of death in my mothers case was the delay of 1 year in detecting lupus. Most surgeons have read about lupus only in their books and hence are not able to point out this disease from general allergy.

[Nish2011]

Dear libby,
My mother had similar condition, its basically an autoimmune disorder. Please consult a Rheumatoligist who specialises in autoimmune disease. Please take it very seriously because the patients immune system attacks almost every part of the body including the blood vessels. There is no know cure for this disease till very recently, some new drugs like Belimubab have limited success rate of nearly 40%. Please consult your rheumatoligst on whats the best course of action. People with this condition can live for 20-30 years provided they take absolute care and cleanliness. Also please get a CT scan for her heart to ensure the heart vessel is not damaged. In my mothers case her pulmonary artery (it connects lung to heart) was damaged because of lupus. She died of excessive pulmonary artery pressure. For any further help please feel free to drop me a message.

[meniere135]

I was thinking lupus as I was reading your question, and then I saw that she just got the bloodwork done for lupus.  If the bloodtest does turn out positive for lupus, maybe look into trying a gluten free diet.  Some people with lupus can rid themselves of the problem on this diet....but some can't.  But definitely give it a try.  Hope this helps!