new to group - 4 yo with hypothalamic/optic glioma and NF

[Guest guest]

I have a four year old son who has an inoperative hypothalamic/optic

glioma and multiple brain hamartomas in association with

neurofibromatosis type 1. Possibly the tumor may not grow or if it

does it will do so very slowly. However, the tumor is a malignant

one, and I would like to try and find something that can help him

before the symptoms set in. The doctors will not treat him until he

is symptomatic and the way I see it is - symptomatic means the good

brain tissue is being destroyed (overtaken by tumor) and any

treatment the doctors can offer will destroy more brain tissue.

I have heard of the laetrile therapy, is this suitable for a four

year old and if so how do I find out more info on it? (we live in

Australia)

Does anyone have an opinion on stereotactic radiation therapy

especially the IMRT or FMRT?

Has anyone had any success with the use of Bovine Tracheal Cartilage?

Can anyone suggestions anything else or someone I could contact for

more info. Thanks