The Tristan Project
The Continuing Journey of My Child with Albright Hereditary Osteodystrophy (AHO)
The following is the continued saga of my beautiful son Tristan. It has nothing to do with the Tristan Project related to the Wagner opera inspired by the tale of Tristan and Isolde. My child Tristan was diagnosed at seven months of age with a rare genetic metabolic disorder called Albright Hereditary Osteodystropy (AHO), which can be associated with bone growth within his skin (osteoma cutis), developmental (severe speech delays associated with PDD-NOS, a form of Autism Spectrum Disorder (ASD)) and growth delays as well as in his case the relatively rare metabolic disorder called pseudopseudohypoparathyroidism. The links below are updates I provided to family and friends throughout the years. I provide them here for others who discover themselves along a similar pathway.
The Tristan Project: www.inspired-housewife.com
The Horror and Relief of the Initial Pathology Report
The First Protector: The Tristan Project is Born
The Second Protector and Genetic Testing
Developmental Testing at Kennedy Krieger Institute
The Fourth Protector: God Came Down from Heaven Today and Kissed My Son Tristan
Results of the Gluten-Free Diet Change
Growth Hormone Testing and Results
The Start of Growth Hormone Therapy
Neurocognitive Testing
The First Year of Growth Hormone
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