Hello. I would like to help you with your question but I have a couple of questions for you so that I can assist you better. Are her symptoms only at night or do they also occur during there day but perhaps milder? Has she had any testing to evaluate possible immune system deficiencies? If so, what tests were done and what were the results? Has she been screened for Cystic Fibrosis? Is she growing and developing well otherwise? or is she also having poor growth and weight gain in addition to the pale lips and lethargy? Is there any family history on either side of respiratory or immune system disorders?
Ok great that there are no problems with growth and development. I have a few more questions....
What kind of specialist are you seeing? Pulmonary or Allergy/Immunology?
Do you know if the infections are always in the exact same location? or different parts of the lungs? Have any X-rays or scans been done to assess the anatomy of the lungs and vasculature?
Also have any immune deficiency tests been done outside of a complete blood count and antibody tests that you described (like complement levels or genetic tests)? Any hopes on trying for the Cystic Fibrosis test again or looking for genetic markers for that?
The high IgE (unless it was astronomically high) can occur in people with asthma or allergies so that doesn't concern me too much.
Thank you for your patience as I am trying to get as much information as possible so that I can help you...