Tristan’s Story is the Continuing Journey of My Child with Albright’s Hereditary Osteodystrophy (AHO), ADHD, and Autism
Tristan’s Story and The Tristan Project is the continued saga of my beautiful son Tristan. My child Tristan was diagnosed at seven months of age with a rare genetic metabolic disorder called Albright’s 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 pseudohypoparathyroidism type 1a. 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 Chapters
-
The Early Struggles
-
The Horror and Relief of the Initial Pathology Report
-
The First Protector: The Tristan Project is Born
-
The Second Protector and Genetic Testing
-
The Third Protector and New Hope in Philadelphia
-
Developmental Delays and the Start of the Therapies
-
Developmental Testing at Kennedy Krieger Institute
-
Second Visit with Dr. Kaplan
-
The Formal Autism Diagnosis
-
Gluten-Free Diet Change for Tristan
-
The Fourth Protector: Albright Hereditary Osteodystrophy Specialist
-
Results of the Gluten Free Diet Change
-
Tristan’s Endocrinology Update
-
Growth Hormone Testing and Results
-
Developmental Update
-
An Update on Tristan
-
An Early Christmas Gift for Our Family
-
The Start of Growth Hormone Therapy
Updates to be completed
Neurocognitive Testing
The First Year of Growth Hormone
The Second Year of Growth Hormone
Tristan Starts Kindergarten