Alexis P.
Indiana
Birth Date - February 19, 2008
Main Diagnosis - Epilepsy & Autism
Alexis's Story
When Lexi was a year old, we started noticing some odd behaviors such as banging her head on the floor, hitting and just having regression of what she at one time could do. She stopped saying words that she once knew. We took her to a developmental pediatrician when she was 2 ½. She was diagnosed with autism, sensory processing disorder, hypotonia and behavior disorder.
In September 2011 she was sleeping and I heard her fall and make an odd noise. I turned on the light and found her having a gran mal seizure. I called 911 and she was taken to the ER. After 2 hours they released her under the impression she had had a febrile seizure and she would be fine. We were back at the hospital and admitted just 12 hours later after she had 6 more seizures. Two weeks later Lexi had another seizure. The doctor diagnosed her with epilepsy and sent us to a neurologist.
Her seizures got worse in 2013 and she had a vns placed. In March 2014 she had her first 40 minute seizure. She was admitted to the hospital and for the next 2 weeks Lexi had seizure after seizure. No one knew why. In 2015 we decided to try the ketogenic diet but that to failed as she lost so much weight and was so sick it wasn’t worth it. She is currently on 3 seizure medicines, 1 adhd medicine, 1 behavior medicine, and medicines for allergies and to help her sleep. She has seen a geneticist who found a few chromosome problems and gene problems but none pin point what is causing all of her medical problems.
THANK YOU:
Here is a picture of Lexi with her quilt. Thank you so much. We absolutely love her quilt.
