Pediatric goiter neck swelling labs fine

My son (11) has had "croup" 8-9 times a year, mostly with a swollen neck.  Docs have palpated an enlarged thyroid for years and have done every conceivable test relating to a Thyroid (T3, T4, TSH, antibodies, and a long list of others that I cannot even remember).  All normal.  He has been scoped by an ENT who saw mild to moderate subglottic edema and said see a Rheumatologist.  Saw the Rheumatologist who said "labs are fine.  See an Immunologist."  Can't get to see our Immunologist until months from now.  Neck is swelling out with increasing frequency (was about every 2 months...now about every 3 weeks).  Often with the croupy bark comes difficulty breathing.  

Gave up on the last episode (which, sadly, had an asthmatic cough and not a croupy stridor cough) and went to the ER.  ER docs had zero clue (other than "it feels like thyroid")  Duh.  No referrals (other than wait for the Rheumatologist who really doesn't think this is it).  They couldn't recommend any doc to see (as since the labs are just fine we don't need to see an Endocronologist.  Meanwhile, his neck continues to swell.....thyroid sticks out...and today he goes "I really just want soft food...but it's weird:  my throat has felt thick, now it's just numb."  He feels miserable.

Does *anyone* out there have any clue how to help us????  Please???

[Red_Star]

It's rare to have croup over the age of 6. I had croup at age 15 and i'm not surprised since i had undiagnosed medical conditions that lowered my immune system.

Common causes of a goiter include iodine deficiency, Hashimoto'’s thyroiditis, Graves' disease, multinodular goiters (one or more nodules within the thyroid gland).  Less common causes are due to genetic defects, injury or infections in the thyroid, and tumours (both cancerous and benign).  The treatment will depend upon the cause of the goiter.