mmml

I posted this in the Immune Disorder thread but thought I'd ask here too....

Almost 2 years ago my daughter was diagnosed with mono. Since that time we have been to countless doctors. This is what I know:
Her EBV titers have never gone below 640 (normally they are greater than 750).
She was diagnosed last week with IGA deficiency.
She tested negative for ANA.

She is a very active/athletic teenager who literally crashes about every two to three weeks. Has to sleep about 20 hours in order to function again. Sometimes these sleeping periods last 2 to 5 days of sleeping 17 to 20 hours.

She also has these issues: bruises easy, takes a longer than my other kids to heal from a scratch/sore, gets bronchitis during the summer when she is at the pool often, has hot cheeks and the rest of her body is freezing (no fever), she gets weird dots on her hands that last a day to a couple of hours, and has muscle and joint pain that is never consistent in area.

I switched pediatricians because the one I had been with told me it was in her head and she had a sleep disorder. The new pediatrician has been working with me and we've had tests done. He also sent me to the infectious disease doctor (she really refuses to deal with the issue of high EBV titers), we have another apt with a pulmonologist because they want to check for asthma. We also have an apt with rheumatologist because the last one didn't do even one blood test.

If anyone has any advice or information they could share with me, I would be very appreciative.
Thanks.