Thea’s scans all came back negative and she was started on the Propanalol treatment as well as continuing on the steroids. The steroids were steadily reduced each week until, just before Christmas, she stopped taking them completely. She is still taking the propanalol.
Thea’s breathing improved almost immediately when she was started on the steroids, although it would come back a little overnight. Since we left Gt Ormond Street, after spending nearly two weeks there, her breathing has been fine and has continued to be ok after stopping the steroids. The haemangiomas have been reducing in stops and starts. There seems to be no change for a week and then suddenly they will reduce. Since starting treatment in September the visible birthmarks on her lips and in her mouth, as well as on her ears and spine, have completely disappeared. The large patches in her nappy area and on her legs are still visible but have recently started to shrink and lighten so that, while still visible, are nowhere near as prominent as they were.
Thea herself continues to grow normally, and she is still generally very happy apart from when we have to wake her to give her the medicine.
More information on haemangioma and other birthmarks can be found at the Birthmark Support Group site: http://www.birthmarksupportgroup.org.uk/