is this an allergic reaction? or something else?

My friend is a private duty nurse who has a pt in her 60s that is vent dependent. Over the past year the pt's tongue swells to the size of my fist. Its happened different times of the day, and with different nurses there. She doesnt really have any other symptoms other than her tongue swelling, which got so big it was actually starting to crack and bleed. At home they give her Benadryl, Vistaril, and an epi-pen, which didnt help. She goes to the ER and is in the hospital for several days before it starts to go down. She has been tested for allergies, nothing but trace peanuts. but theres nothing in the house that even has peanut oil, the nurses check all the food. the docs and at hospital never come up with an answer, they usually says its Angeioedema and send her on her way. has anyone heard of anything like this?
You're asking on behalf of your friend, who is a nurse?Shouldn't your friend be asking the overseeing doctor?If it doesn't respond to benadryl or epinephrine, my vote would be "something else"

Hereditary angioedema does not respond to antihistamine, epinephrine, or the usual corticosteroids. If a definitive diagnosis of hereditary angioedema can be made the woman should be on some sort of long term prophylaxis, but what do I know. These are things that your friend should be discussing with her patients physician.

Sounds like a bradykinen disorder. Maybe related to something obvious like an ace inhibitor. Could also be something more complex such as a hereditary disorder that is constantly activating her complement system.

Angioedema could be what's going on - many times that also involves lips, as well.... would imagine they thought of that with this happening many times over...

OP, from what you described, angioedema is what it sounds like to me. I've seen angioedema that only causes the tongue to swell and nothing else.

I agree angioedema. To me it sounds like it may be caused by something in the environment because it resolves when she's hospitalized.

Sounds like a good case for crowdsourcing. This is publishing the problem where large numbers of doctors can see it and usually one or more will say "I know what that is". I'm not sure how to submit a case for crowdsourcing but you can probably with some searching, good luck.

Quote from ScottEHereditary angioedema does not respond to antihistamine, epinephrine, or the usual corticosteroids. If a definitive diagnosis of hereditary angioedema can be made the woman should be on some sort of long term prophylaxis, but what do I know. These are things that your friend should be discussing with her patients physician.

I was asking on behalf of the nurse that works in the home, she was sitting next to me and asked me to post the question. She has spoken with the docs. Everyone seems to have a different opinion. Just curious what other nurses thought. Thanks everyone for the input