Hi - my son has had this for 4 years - I go on here to see if there is anything that helps and also to understand why it affects him so much.
Have you tried Bepathen? Its the only thing that has helped his - he keeps it on his lips when he is home and takes it off when he goes to class - seems to help somewhat. He is also eating very healthy now and taking probiotics and eating probiotic food. He has been tested and has is allergic to many things - mainly outdoors - not food so we have gotten an airpurifier for his room a new latex mattress and allergy bed case, etc.
We are in Phoenix and his dermatologist had him go on the Grand Rounds at Phoenix Childrens hospital which is a very good hospital.
None of the doctors really had anything new - they suggested more tests and our insurance wasnt great at the time so we didnt do a lot of them, and when we found out about all these allergies we focused on that. One of the allergy doctors said it could be from allergies. Bepathen has been the most help of anything so far - even though it is only temporary.
I think what caused this was was that he was put on strong Antibiotics for 3 days right after birth because he had jaundice - then he took Acne medication at 16 and it started.
I think in his case, those 2 medications caused EC, so he is now focusing on internal healing.
But he is very healthy and is never sick so not sure that is it.
Hopefully with the internet and all these people together someday we can find out how to cure this.
I know it has badly affected him and many others!
Oh - and he did leave alone for like 6 months - never left the house - it didn't help him, btw