Sam
Frisco, Texas
Sam was born March 2001 to Sal and Jen, and older brother Alex. Jen’s pregnancy was normal and Sam was induced and delivered normal at 41 weeks. His first 6 months were uneventful. Although mom noted he developed more slowly than his brother (2years older).
Sam began Physical Therapy with First Steps at 9 months. OT and Speech were added over the next few months and continued through middle school. At about 9 months Sam had his first eye-dancing episode. A few months later he had a drop seizure (lost all muscle coordination). Both episodes sent us to the emergency room for various tests from MRI to CAT Scan, blood and urine samples. All test came back normal.
We finally changed neurologists and Dr Garg at Riley Hospital (since deceased) in Indianapolis recommended a spinal tap and consulted with Dr. De Vivo at Columbia. This resulted in our first trip to New York City when Sam was age 2 to confirm his G1D diagnosis. We began the Ketogenic Diet and Sam is still on it to this day. Although, he only had two known seizures prior to diagnosis and the KD, Sam’s disposition changed dramatically after being in ketosis. He was much more content.
Sam began school in Early Childhood with an IEP at age 3 and was promoted to into Kindergarten with his peers. Sam did not speak until age 4 or walk independently until age 5, but his comprehension was solid. Sam continued to have PT, OT, ST in school and hippotherapy year round outside of school since age 5 years. With his IEP, Sam had a full time aid through elementary school. When we moved to Texas at age 10, various school therapies were dropped, but he continues with Therapeutic Riding and Brain Therapy, as well as tutoring in the summer, and receives regular chiropractic care outside of school.
Sam continues in mainstream schools, although when we moved to Texas we decided to have him repeat 3rd grade. Sam is now a sophomore in High School in regular classrooms with some inclusions support and accommodations, and the only class he has in Resource is English/Language Arts. He enjoys and does well with his academics, but he does spend extra time studying.
Sam sings in the high school and church choirs. He also started his first paying job (3 hours once a week in the summer and once a month in the school year). He enjoys lifting weights and works on coordination training by punching and kicking a heavy bag. Sam works out 3-4 times per week along with his horse back riding. Sam also feeds and walks the family dog as his regular responsibility. He is becoming more and more independent each year. Sam also does brain training on a weekly basis to assist in the development of his fine and gross motor skills, balance and agility. Sam is still on the ketogenic diet and is growing taller each year. He still have somewhat limited balance and coordination. Sam had no remarkable G1D seizures or events until about age 16 when he had significant growing spurts and began maturing through puberty. He has had occasional PED (physically induced dyskinesia) events, but these are short and he recovers quickly with 10-15 minutes rest and a high-fat snack. Sam is a delightful young man and we are confident that he will have a bright and productive future.
Sam began Physical Therapy with First Steps at 9 months. OT and Speech were added over the next few months and continued through middle school. At about 9 months Sam had his first eye-dancing episode. A few months later he had a drop seizure (lost all muscle coordination). Both episodes sent us to the emergency room for various tests from MRI to CAT Scan, blood and urine samples. All test came back normal.
We finally changed neurologists and Dr Garg at Riley Hospital (since deceased) in Indianapolis recommended a spinal tap and consulted with Dr. De Vivo at Columbia. This resulted in our first trip to New York City when Sam was age 2 to confirm his G1D diagnosis. We began the Ketogenic Diet and Sam is still on it to this day. Although, he only had two known seizures prior to diagnosis and the KD, Sam’s disposition changed dramatically after being in ketosis. He was much more content.
Sam began school in Early Childhood with an IEP at age 3 and was promoted to into Kindergarten with his peers. Sam did not speak until age 4 or walk independently until age 5, but his comprehension was solid. Sam continued to have PT, OT, ST in school and hippotherapy year round outside of school since age 5 years. With his IEP, Sam had a full time aid through elementary school. When we moved to Texas at age 10, various school therapies were dropped, but he continues with Therapeutic Riding and Brain Therapy, as well as tutoring in the summer, and receives regular chiropractic care outside of school.
Sam continues in mainstream schools, although when we moved to Texas we decided to have him repeat 3rd grade. Sam is now a sophomore in High School in regular classrooms with some inclusions support and accommodations, and the only class he has in Resource is English/Language Arts. He enjoys and does well with his academics, but he does spend extra time studying.
Sam sings in the high school and church choirs. He also started his first paying job (3 hours once a week in the summer and once a month in the school year). He enjoys lifting weights and works on coordination training by punching and kicking a heavy bag. Sam works out 3-4 times per week along with his horse back riding. Sam also feeds and walks the family dog as his regular responsibility. He is becoming more and more independent each year. Sam also does brain training on a weekly basis to assist in the development of his fine and gross motor skills, balance and agility. Sam is still on the ketogenic diet and is growing taller each year. He still have somewhat limited balance and coordination. Sam had no remarkable G1D seizures or events until about age 16 when he had significant growing spurts and began maturing through puberty. He has had occasional PED (physically induced dyskinesia) events, but these are short and he recovers quickly with 10-15 minutes rest and a high-fat snack. Sam is a delightful young man and we are confident that he will have a bright and productive future.
