Welcome to Mackenzie's Walk : May 15, 2008

Mackenzie, we call her Kenzie, is a spunky little 4 year old! She loves her two brothers Corey and Ryan. She loves her puppies Zoey and Cloey. Kenzie has never met a stranger! Everywhere she goes she greets them with a "hi" and a beautiful smile! Her speech is limited, but she will do everything she can to get your attention. Honestly, its hard to miss Kenzie! We started seeing issues with Kenzie when she was about a year. She wasn't meeting regular developmental milestones and honestly I put it off for a while. Thinking it was because we really never let her do things on her own. She was the baby and only girl grandchild on both sides of the family! She started walking at 22 months. We had her evaluated by Child Find (special education for preschool aged children) and she qualified for services. So she started in the preschool program in November 2004, she just turned 2. She was showing mild progress, but in October 2006, was when things changed. October 9, 2006 Kenzie had her first seizure! After taking her to the ER, and seeing her neurologist, with nothing more than some blood test, CT scan and an order for an EEG, we went to Children's National Medical Center in DC. WOW, they were AWESOME! We went through the ER and things really started happening. They did a spinal tap, (NEG), another MRI (NEG, she already had an incidental finding of a Chiari 1 Malformation, non-symptomatic) and an EEG. Her EEG was abnormal (she had a seizure during the EEG) and she was then diagnosed with epilepsy, having complex partial seizures. After 3 days in the hospital she was put on Keppra 1cc 2x daily and sent home. We did have to up her Keppra to 3 cc once home, because of some little break through. Kenzie was seizure free for almost a year. In October 2007 (almost to the day!!) she had a break through seizure! Up her Keppra to 4cc with a few break through, but things were going ok. We had notice Kenzie falling down a lot. At first we thought she was tripping, but later we saw her fall and there was nothing to trip on. I started doing research on the internet and saw a description for atonic seizures! WOW! Then one day at school she fell 6-8 times for no apparent reason. We knew she was having atonic seizures (drop attacks). Called Children's and was told to bring her to the ER right away! When she was seen it was late and they just sent us home with her Keppra raised to 5cc 2x daily (1000mg). That was the first time I was really unhappy with Children's. Followed up with HER neurologist and they order another EEG. Came back, abnormal and she was actually having atonic seizures. Taken off of the Keppra (we had to ween her off) and put on Depakene. Kenzie started having about 20-30 seizures a day while on the Depakene. Which brings us to the present