Details

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If you are really interested in this very complex problem, here is most of our support information.

Symptoms

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Ben's Symptoms
CNS Lesions Summary Page
Scalp Lesions
Eyelid Swelling
Seizures & Loss of Sight
 

History / Sequence of Events / Timeline

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Overview Timeline - See the main items in timeline format
Summary Story -  If you want to get familar with Ben's case quickly
Detail Story with all Test Results -  If you want to know the detials
Test Result Sumary Table
Journal -  If you want to know what is happening from day to day, all the details
Doctor's Notes - These are my quick notes, I could have misinterpered some of the things the doctors have said
Ben's Doctors
Frequently Asked Questions
 

Pathology and Diagnosis

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Dr. Dehner's Pathology Report on Ben
Dr. Jaffe's Pathology Report on Ben
Procedures & Biopsy Thought Map
Biopsy Sites Summary - An attempt to list all the potential biopsy areas, pros and cons associated with these areas, and which of the main LCH test were done
Pathology Key Information - Via article, abstract, web reviews and doctor discussions
Pathology Comparison Between JXG and LCH - Included classical pathology for JXG & LCH, case reviews, and Ben's pathology) - Ben seems to align with 'Early' JXG
Dr. Jaffe's 'The Histiocytoses'
'Juvenile Xanthogranuloma: Forms of Systemic Disease and their Clinical Implications' - by Freyer, Kennedy, Bostrom, Kohut & Dehner on JXG and the 36 known cases of it.
 

Treatment

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Treatment Thought Process Map - Potential paths for treatment of Ben
Potential Chemotherapy List - All the possible chemotherapries Ben could take listed out
Medication List - What Ben has taken, including chemotherapy
Blood Counts - We have listed Ben's blood counts in tabular format
Growth - We are monitoring to see if Ben is growing normally or if the treatment is slowing him down
 

Key References

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'Juvenile Xanthogranuloma: Forms of Systemic Disease and their Clinical Implications' - by Freyer, Kennedy, Bostrom, Kohut & Dehner on JXG and the 36 known cases of it.
'Central Nervous System Disease in LCH' by Dr. Nicole Grois
'The Histiocytoses' by Dr. Jaffe
Dr. Jubran's Presentation - Dr. Jubran's wonderful presentation she gave at the regional meeting in LA for the Histiocytois Association.
 

Links

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References
Web Pages
Books
Key Doctors