Lymphangioma (eye&intestines)

Someone please tell me what to do if anything.  My three year daughter has intestine blockage that comes and goes since she was four days old.  Her left pupil has been smaller since birth.  But it was dignoised until September 2008 when her eye swelled and they found she had Lymphangioma.  About a month and a half later her intestines started to act up.  Doctors are telling me they can't figure out the intestine part.  They think they are linked but can't prove it.  They tell me if they are linked she'll be the first person.  Is there really no one else out there that doesn't have both?

[sweetpea03]

Did they biopsy the Lymphangioma in the eye to make sure that is what it is? Normally having a lymphatic malformation in those locations, having them so far apart, would be unlikely. So I don't think that they are related personally, but it is possible. It would be called Lymphangiomatosis if it is in more than one location. Are you going to a specialist who has experience with this condition?