Meet Drew - An Awesome Doose Warrior

The first seizure was at 3 yrs 1 month. My 5 yr old daughter asked me while I was in the kitchen working “Mommy…. Why is Drew shaking?” I went to check on him and he was in a full-blown tonic-clonic. He was blue… I thought he was dying. God Bless her I told her to call 911 and she did. I have no idea how long that seizure lasted, but our life was irrevocably changed. The ER Dr said it was probably febrile and would probably never happen again. Except it did… and they kept coming more and more and worse and worse. We couldn’t get in with a neurologist for months. Meanwhile, we were trying to keep it all together and continue life as normal for our daughter and ourselves. Five months into this, One day he just kept having one after another… we skipped our local ER because they had not been very effective in treating his seizures and went to the tertiary hospital 2 1/2 hrs away at 10 o’clock pm. After long hours, He was admitted for NCS almost immediately and taken to ICU and placed on a versed drip for 3days. After that, we realized what we were dealing with was not typical…. We’ve tried everything. Nothing has really helped in the long term.