My daughter Katie was diagnosed with Diabetes Insipidus (DI) in January 2010. Subsequent MRIs showed a pituitary tumor in April 2010. Based on her age, condition and a couple other factors, the tumor board decided this was most likely LCH and it would be best to treat it as such. Katie underwent protocol IV for the second half of 2010. She was eventually diagnosed as growth hormone deficient (ghd). As of today, she is a happy healthy 7 year old with only the DI and GHD remaining.
Because of the rarity of this disease, it feels like it can be difficult to locate others close by that are going through a similar experience. I'm hoping that we can all find each other to find support and friendship while we battle this disease.