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I have a son that is in kindergarten. One of his best friends in class is a sweet little boy named Logan. I have become great friends with his Mom. As our children play together, we talk over coffee and share stories of our families. I had no idea that this wonderful family experienced infantile spasms with their son. As I heard the details of their heartbreaking story, I was amazed at their strength and the miracle of Logan’s recovery.
“An infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day.” (www.ninds.nih.gov)
Logan was about six months old when his Mother noticed a very slight action that seemed unusual. She and her husband would discover that this was the first of many episodes that would occur and connect their son to Infantile Spasm. Their persistence in discovering the cause led them to a frightening diagnosis, long treatments, and miraculously, a full recovery. To see him today, Logan is a happy, smiling, and brilliant six year old.
This family created a website that documents their journey through diagnosis, treatment and details of their experience with this condition. I admire their efforts and time that it took to create and share their story to give others hope.
Here is this family’s story in full. http://loganandrew.com/