Big Picture

Tomorrow we get the results of my son's spinal MRI and repeat Ultrasound (autoimmune lab results next week).  I find myself trying to look up specific things and then coming back to the big picture.  I want to ask questions.  I know all the symptoms, tests, medications and specialists we've seen.  I want to make sure that the big picture is acknowledged and taken into consideration for the diagnosis. The big picture is:

SYMPTOMS:
-Swelling (mostly facial, some foot)
-Hives (non-itchy) / Lumps (belly button, foot) / Bruising (buttocks)
-Incontinence / Frequent constipation / diarrhea
-Recurrent Infections (mostly throat) / Cough / Asthma
-Stomach / Back pain

KNOWNS:
-Duplex Kidney = positive
-Angioedema  = suspected
-Tethered Cord = suspected
-Cystic Fibrosis = negative
-Allergies (environmental / food) = negative

MEDICATIONS:
-Flonase (daily)
-Flovent (daily)
-Zyrtec (daily)
-Xopenex (as needed)

DOCTORS:
-Pediatrician (currently)
-Urology (currently)
-Allergy, Asthma, Immunology (currently)
-ENT (as needed)
-Pulmonology (previously)
-Infectious Disease (previously)

QUESTIONS:
-Could Angioedema be the reason for swollen kidney with fluid, bladder wall thickening and incontinence?
-Could a neurological issue be the reason for swelling and incontinence?
-What other possibilities should be considered?
-Should the autoimmune labs be considered?

TIPS:
I believe parents to be the child's biggest advocate and an integral part of the correct diagnosis. Big pictures are important and should be brought up to every doctor you see.  Make copies of lab results or summaries from various doctors and share those in your appointments. Listen to your "gut"...don't be afraid to ask questions.