my son is almost 8yo. he was diagnosed with NF1 at age 2. he has an optic glioma and parietal lobe hamartoma. we always knew that there was something else going on but never could figure it out. until last month when i came across an article on tuberous sclerosis complex and found several skin manifestations we had not been able to explain before. i googled NF1 and TS and found an article that combined the 2 syndromes. Orens doc agreed and is sending us to a neuro out of town. has anyone else heard of this or does anyone have it? can you tell me anything about how it feels? also can you tell me how it feels to have a tumor in the brain. Unfortunately Oren is unable to express himself other than telling me "hurt!" any help or advise would be much appreciated.
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