Kevin, April 1998
Welcome to Kevin's home page! This page is dedicated to Kevin and was written by his mom, Debbie. When Kevin was diagnosed with infantile spasms (a.k.a. West Syndrome) I researched every article and medical journal I could find. The statistics were grim and positive outcomes were not mentioned. I wanted a story with a happy ending. Kevin's story is one…
September 9, 1996, three days after Kevin's first birthday, was the first time I ever heard the words "infantile spasms" (IS). I had witnessed many seizures as a nurse, but these "episodes" (as I liked to call them) were very different. Sitting in the neurologist's office, videotape in hand (fearing they wouldn't believe me—and praying they would prove my suspicion of seizures wrong), we received his diagnosis. We were told Kevin's EEG showed an abnormality in his left temporal lobe causing complex partial seizures, but the seizures on the videotape certainly looked like IS. I was devastated when I heard my remarkably healthy child had epilepsy.
We had been referred to the neurologist because, just two weeks earlier, Kevin started having daily episodes of staring briefly, dropping his head, jerking his arms inward and stiffening his legs. He would cry between each episode. They were very brief, usually occurred no more than three times in a row, ten seconds apart, and stopped shortly after picking him up. They often occurred just as he was going to sleep. We initially thought these were sleep-related problems since Kevin had never slept well and was not sleeping through the night. His grandparents witnessed his first long episode. He sat up in bed out of a sound sleep and proceeded to head drop for over ten minutes. Nothing we did would make it stop. (This is when I began to suspect these "episodes" were seizures). In retrospect, I now know that identical episodes we presented to his pediatrician as "falling asleep sitting in his high chair" (at age five months) were really IS.
After trying the medications— Depakene, Tegretol, Lamictal and Klonopin, Kevin was not improving. He was having as many as 150 "head drops" a day. His longest episode lasted twenty-five minutes; however all tests were normal. His 20-minute EEGs still showed only complex partial seizures. Side effects from medication had caused him to have severe insomnia. Kevin slept only two out of 24 hours and would never sleep more than ½ hour at a time. When he tried to sleep, he would usually have a seizure.
On February 4, 1997, Kevin was hospitalized for a 24-hour video EEG. Our worst fears, and what the doctors had suspected all along, were confirmed. Kevin's seizures were indeed cryptogenic (no identifiable cause) IS. After reviewing all of our treatment options, we decided to participate in a clinical trial using the medication Topamax (Topiramate). Kevin entered the study on February 20, 1997 and we saw his last spasm on March 3, 1997. We have finally stopped looking over our shoulder worrying that the spasms will return. Unfortunately, like many other children with IS, Kevin has developed another type of seizure. He has complex partial seizures, which are distinctly different from his spasms. He remains on Topamax with few side effects.
Kevin currently tests developmentally age appropriate (or above) in all areas except speech and language where he suffered major regression. He is making great progress with the help of an Early Intervention Program and speech therapy. We use sign language to facilitate communication, and are hopeful that in time Kevin will be talking. He occasionally has problems with balance, but this has not stopped him from running and climbing on everything!
Despite the journey Kevin has been through, he is a bright and loving child. He has made us appreciate the importance of family, good friends, and a sense of humor. He has already given us more than we can ever give him. We are so blessed that he is our child. He's our hero!
Thanks for stopping by. Please sign Kevin's guestbook or feel free to email me at wdkhouse@bigfoot.com if you have questions or have a child with IS.
Many thanks to Dr. Haley, Dr. Glauser, and nurses Peggy, Kathy and Anna for supporting us through the rough times and sharing our joy at Kevin's amazing progress. Heartfelt appreciation to the Early Intervention team at the Thomas A. Wildey School and Kevin's speech therapist, Sharon. What a difference you've made in our lives! Granny Smith we love you…wouldn't have survived without you.
Check out these other West Syndrome ("Infantile Spasms") links:
- MISC ("Moms of I.S. Children") Home Page
- Eddie's Story
- Kaitlin's Story
- Melissa's Story
- Jordan's Story
- Jason's Story
- Brianna's Story
- Pediatric Epilepsy Forum
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