It was September 27th, 2008 when my husband was on his way with all of the boys to an event at school. He went to get Chase (age 3) out of the car and found him postictal. I remember hearing my husband say on the phone "Chase is all whacked out, I'm coming home." I thought, "Geez, what'd he do now?" (He's quite the character). My husband explained the symptoms and we quickly rushed him to the ER. We were told it was probably a one time occurrence,
and there was nothing found so we were sent home...and he was just fine. Within 24 hours, Chase had another episode that I witnessed and it went downhill from there. We were able to get the "Big Stuff" (big seizures) under control, but it was the little stuff that we couldn't get under control with anti-seizure medications. Chase has since been diagnosed with Doose Syndrome and was having hundreds of drop attacks daily...these were dangerous as he would just buckle and his face would plant into the table, his bike handles, the sink...you name it, his face planted into it and he eventually just found the couch his "safe zone."
HEARTBROKEN, we proceeded to seek other treatment as he had failed 3 anti-seizure medications and was allergic to a 4th. Working in cardiac care, when we learned about the high-fat ketogenic diet our initial was a big "HELL NO." HOWEVER, we were determined to to get our boy back! This drooling, non-communicating, non-social little man was not our Chase (still makes me tear up to think about it). We started the diet in the Spring of '09 and have found ourselves asking why we didn't start sooner. He was seizure, and MEDICATION FREE for over a year. We've had some set-backs here and there, but diet has mostly been the answer. (He is on a small dose of meds right now but we are trying to wean off of them).
This is not fun, but when you see that glimmer in your child’s eye, that smile or desire to play again...it is ALL WORTH IT!
HANG TIGHT! Look "UP" for guidance...HE is there!