What are Infantile Spasms?
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. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found.
Emma was diagnosed last year on 12/24/10. The first drug we tried (can't recall the name), she was unresponsive for 2 weeks. Then we started ACTH (a steroid), the results were immediate 6 days into the treatment. She's been seizure free ever since. How blessed and appreciative we are for these results.
Every time I see children suffering from epilepsy or seizures, my heart goes out to them and their families. It's one of the toughest things I've been through so far in life. Being on the other side, I just want to offer my love and service to anyone that needs it. I have this deep appreciation to all that supported our family through this difficult time.
A special thanks goes out to Dr. Mendelhoff (Pediatric and Adult congenital Heart surgery) and Dr. Majeed (clinical neurophysiology,pediatrics and pediatric neurology) just for being who they are.
Here's a few pics showing the progression:
- starts off with EEG testing
- steriod treatment, side effect is weight gain as you can tell
- recent haircut, learning and thriving seizure free
- right after successful heart surgery, our little SOLDIER
Much Respect,
The Wilson Family
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