What are the long term impacts to Ben?
A. We are quite uncertain. Two things will impact Ben long term – the disease itself and the effects from treatment (chemotherapy, surgery or radiation). From the disease itself, death is one we are, of course, vary concerned about. He could end up with learning disabilities – for some reason, people with LCH have some tendency toward depression and some learning disabilities. He could end up with some physical impact. LCH has a very high association with diabetes insipidis – LCH somehow attacks the pituitary which controls how much you drink and urinate. The other part of the pituitary controls growth – which would impact his height and size (see additional information below). Bone involvement can damage key bones. Lung involvement may impact his pulmonary abilities long term. We are not sure how many systems will be involved in the long term and what the impact of that involvement will be. Chemotherapy will impact him as well, at his age it will impact his growth and overall height.
