epidermolysis bullosa

Do any moms out there have any experience with this? My son is 4 months old and we have been battling what we think is eczema doctors are unsure as to what’s going on as well with his face. We are using a steroid cream prescribed by his pediatrician and it has helped but not really it will clear up and then just come right back all in a matter of one to two days. He’s scratching at his face which just irritates it even more i put socks on his hands but he will just rub his face with those and it’s just as bad. Theirs been a few occasions I’ve caught his rubbing at his face with his hands with socks on them or against his blankets so much and so rough his face will be bleeding. Now my older sister has EB she actually has the worse most severe case she wasn’t supposed to live past a week old however she just celebrated her 30th birthday. She is the only person in the family that has it I didn’t get it my oldest son didn’t either. I’m starting to wonder about the possibility that my baby might have a the least worrying type of EB. I don’t know much about it considering all I do know is all about the type my sister has which is bad. I’ll be calling his pediatrician tomorrow have him seen again or maybe get a referral to a dermatologist for children.