My name is Margaret and my daughter was diagnosed with an hemangioma when she was 7 months old. How they discovered it was she had rectal bleeding when ever she had a bowel movement. They looked up her when she was a baby and said that she had a hemangioma and not to worry about it. She also had one on her left foot on one of her toes and her to nail beds are blue. She was fine and the bleeding had stopped until two months ago.
She is now 15. I took her to a GI specialist who did a colonoscopy who came back and reported that she had a very rare AVM in her colon that was quite big. She had a cat scan which showed that the AVM went thru her colon into her lower uterus and her gluteus muscle all of which is on the left side. She also had an MRI of her brain which was clear. She also had another MRI which have been forward to Boston Children's Hospital. At this time they are requesting an angiogram.
I have found so much information on this support website. I was really clueless until I read everyone's stories. I would like to thank everyone who has written me back with their support. Thru this support site I heard about Dr. Yakes and I have forward her cat scan and MRI to him in Colorado. I am waiting to hear from him to see if he can help my daughter.
I have not heard back from Boston at this time. I do feel however that the glue embolizations that they want to do for my daughter is not an option and something that I do not want to put her thru continuously. I know that surgery is also not an option because the AVM is so big.
I will keep you posted as to what happens. Again I need to thank everyone who responded to me.
Update 5 Jan 2002
I heard from Boston. It seems they have to correct Tarah's colon. We will be going for more testing the end of January. Tarah will have to have surgery. They haven't discussed her AVM that are in other areas of her body yet. I will keep you posted as to what lies ahead. Please keep her on your pray lines.