Hi.. I'm sorry to hear you have had such a hard time.  I just wanted to reiterate that we do know best.  I've been off the forum for a while as my little Ethan has been poorly.  On top of his EGID last week Saturday before last, he developed a sore toe (big toe) and a fever and was very out of sorts. On Monday I took him to the GP who prescribed ABIO's, 2 days later the blisters and sores on his tow were spreading rapidly and becoming angry.  I took him back, more ABIO's.  SO on Thursday I took him to A&E and he was admitted to hosp and put on an IV of ABIO's.  The tow was not getting any better and I was shouting lots for someone to do more ( i was worried he was going to lose his toe, it was that bad).  Finally on Sat evening a senior Paed looked at him and tried to get him moved to GOSH but couldn't he said the toe was in danger of becoming gangrene.  We eventually moved to a specialist plastic surgery hospital on Sunday at 8am - he was operated on at 12 noon as he was now in danger of losing his toe.  THe surgeon told us that lost of his tissue had died and was removed.  I'm so glad I shouted lots.

We still don't havbe answers as to what this was or what caused it , despite biopsies being done. - questions are being asked as to whether it's related to his EGID or steroid use.

Does anyone have a similar experience of infected digits that get out of hand and don't respond to treatment?

With love and hugs to all mums out there trying to get their little ones through this.

Donna x