Amanda - posted on 04/09/2013 ( no moms have responded yet )
My 19 month old daughter has had an optic chiasm tumor since birth that has grown just slow enough to avoid biopsy up to this point. She is now starting to have drastic mood swings, sleep problems and precocious puberty symptoms. I am curious if anyone out there has had tumors in this area that are not associated with NF1 and if there is anything they have tried in order to prevent or slow tumor growth. I currently have her taking Aloe (juiced) and Hemp Seed Oil through her feeding tube. The feeding tube was put in independent of the tumor issues as she was born with a paracidic twin attached to her palate and now has a strong oral aversion. She was never even supposed to make it out and into this world so I am extremely grateful that she is even here today. I am especially concerned about the risks associated with doing the biopsy as we have been told that it is likely that she will stroke, hemmorage or possibly not make it through the surgery at all. She already has periventricular leukomalacia and a hematoma to accompany all of this.
Does anyone have any suggestions or words of wisdom?