Looks like there are only 3 of us in this community. Can we begin a discussion around the details of the LCH in our lives (whether it's us or our loved one)?
My son, age 23, was diagnosed in November, 2008, with single-system (bone) multi-focal LCH. He began chemotherapy today (1-2-09).
In all the research I have done, I have found no references to the symptom that put him in the hospital the first time, leading to the CT and MRI that found his skull lesions. On 2 separate occasions, he had episodes of altered mental status, including violence and aggression, with no recall of these events. This young man is actually a very calm, shy person. Two of his skull lesions have extensions that press on the lining of the brain, but no one has said they are responsible for this weird behavior.
I have seen references to CNS involvement, but other than the hypothalmic-pituitary problems, nothing about behavior changes, altered mental status, or amnesia.
Anyone out there have similar symptoms?