multiple hemangioma's 5 year old cape town
We are based in Cape Town South Africa and have a 5 year old boy with multiple hemangioma's, in the neck, wrist, back and mostly internally in the gut which are bleeding chronically. He was probably born with these but nothign was detetcted in the womb or after. The one on the wrist was suddenly visible when he was 2 years old.
We have been treated at Red Cross Memorial hospital as well as privately for the last 3 years and have been told there is no cure for this condition nor treatment. He has had several blood transfusions as well as surgery on the wrist three times to try and remove the Hemangioma, which keeps growing back and is now the size of a ping pong ball. The one's in the neck and back also seem to be rather large.
The concern is the gut as there are several of Hemangioma's which seem to be bleeding all the time resulting in ongoing transfusions. The doctors have tried everything they can to stop the bleeding, but donít have much luck, with his condition not improving and the doctors having no answers or long term plan of treatment. They say they have never seen this in the gut before and the extreme treatment would be a bowel transportation.
Current treatment: 10ml of ferrimed orally daily. Scopes every one to two months to try and stop bleeding and see what is happening in the gut. Blood transfusions as and when the hemoglobin count drops (5 transfusions last 18 months, lowest hemoglobin count 5.5 and near zero iron stores)
No explanations for the various Hemangioma's cropping up all over and growing. No long term plan for treatment of the gut as they say medically no cure.
They want to look into the small bowel and establish if any hemangioma's there, but so far unable to.
Please help, I have all the medical reports etc at hand and have no idea who to speak to. There is no answers or treatment in South Africa.