Hello, my 13 year old son was recently very ill in hospital with pneumonia, and then he developed ulcers/blisters in his mouth and throat - his lips were all broken out with sores also. The were extremely painful and didn't respond to any treatment until eventually steroids were prescribed. He had quite a lot of abdominal pain also, which they put down to the medication he had been on. He also had a few very red, raised spots on his feet, but they eventually faded. We live in Ireland and he was eventually transferred to Dublin as his symptoms were mystifying the medics - we were honestly getting a different diagnosis every day!
The first indication that something was wrong was when his lips started swelling, and then the blisters/sores started in his mouth and throat. He had a similar incidence 5 years ago which also started with his lips swelling - this incidence was worse and his eyes were also affected - he couldn't open his eyes for a few days as they were very painful and red. At the time he also had Chicken Pox so they weren't sure if it was a reaction to that.
He has had ongoing pain in his abdomen and sickness over at least 6 years also, which results in him missing quite a lot of days at school.
The consultants in Dublin seem to think this last incidence might be Stevens Johnson Syndrome but the consultant near where we live thinks it might be Bechet's.
I am really sorry for this long message but I was wondering if these symptoms sound familiar at all or if anyone had any advice. He was in a lot of pain and discomfort in hospital and nothing helped him at all (not even oramorph) until the steroids starting working.