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Case Summary
Here is a summary of Ben's story. Here is further pre-disease background on Ben, We have been taking notes, as diligently as we can, of all conversations with doctors. We have also rolled up all the test results into one summary table (coming soon). We also have the very high level timeline here and a day-to-day journal here (coming soon). Here is a list of Ben's Doctors.Ben's Symptoms & Presentation Summary
Ben went into the hospital because his eyelid was swollen shut in a very short period of time. We later learned the swelling was probably due to an orbital bone lesion. He has had some scalp lesions since about mid February, but they were not very notable. His brain lesions were found while doing an MRI of his eye area. The seizures started shortly after we found out about the brain lesions, and stopped after he was placed on Phenobarbital. The lung nodules were found on a body CT - Ben has 5 or 6 small nodules in his right lung. He had a biopsy of a suspicious lymph node in this groin area - but the node was not abnormal. CT also found an 'uncharacteristic concave thymus'. He does not currently appear to have liver, spleen or GI involvement. Ben does not currently have diabetes insipidus. Here is a summary of Ben's Symptoms in tabular format.
Pathology and Diagnosis
We have results from Dr. Dehner's pathology report on Ben. He examined a scalp lesion and a brain lesion and believes Ben has JXG. We also have the results from Dr. Jaffe's pathology report. Dr. Jaffe concurs with Dr. Dehner. Ben has had several biopsies, and here is a summary of these sites. We have done a ton of reading on the pathology of these complex disease and have summed the key items into this document and we have compared the differences in pathology between JXG and LCH in this table. Scalp lesions typically do not return good diagnostic results for LCH - they seem to 'burn out'. Brain lesions do not seem to be created by the same mechanism as the telltale langerhans cells in other location. Here is the order we did all the biopsies in.Treatment
Ben's medications are listed in this table. The though process we are using for treatment can be found here. Ben's blood counts can be found here. His growth & weight gain can be found here.
