Katelynn’s Story


In May of 2008 my mom was keeping Katelynn while we were moving. She called in the middle of it and said Katelynn just had a seizure and we are at the ER and they need to talk to you. They were a little over an hour away. So we stopped everything and went to Oklahoma City to the hospital. They did no testing and said it was just from a fever. Her temp had gotten up to 104.8. We followed up with our doc and they said she will probably never have another seizure again. A month and a half later we had another one. This time we went to our local hospital. They ran a ton of tests to see why she kept having high temps this time 103.6. Said it was from a bladder infection and would probably never have another one again. I could only wish. In May of 2009 She had another febrile seizure. We moved to Texas and then in March of 2010 My husband got a job in Arkansas. He moved a week before we could join him. We were there one week. That Sunday morning we were up early and Kate was pretending to be a dog, she stood up and was about to talk and fell. I thought she tripped on the bean bag at my feet. But she did not get up. I looked down and she was having a GTC. It was 6:35am and it lasted about 3min. We went to the local ER. They said her temp was 99.5 and that was the cause. I knew in my heart they were wrong. As soon as we got home I packed the girls clothes and we kissed my husband goodbye. We still had medicaid in Tx and nothing in AR. I drove for the longest 6hrs of my life. On the way to Texas she had one in the car at 3:10pm. I had to pull over in the middle of no where and pulled her out of her seat and put her on her side. Crying my eyes out I drove as fast as I could. We made it to Childrens Hospital in Plano where mine and my husbands parents were waiting. They got us right in and then she had another one at 6:47pm. They put her on Keppra and sent us home. We had tons of seizures and it would be 3 weeks before they were going to get us in to see the Neuro. We were in and out of the ER for the next three weeks. Then they wanted us to see the nurse practitioner. They kept increasing the Keppra. I called almost every day because of the amount of seizures we were having. Over 50 a day at that point. We finally got to see and epilepologist and did a 24hr video EEG. They came in the next day and said she has Myoclonic Astatic Epilepsy, and added Depakote. That stopped the GCT but we were having tons of drop seizure and every other type of seizure it seemed like. In June they added Topamax then they decided to try steroids on my request. By July we were seizure free. So we thought. That lasted one week and then out of no where boom a drop. We were right back to where we started. They added Banzel next. That did nothing. So we took that one off and the topamax at two different times. By then her doc agreed to try the Ketogenic Diet. I had been asking to start it in May but she did not want too. After all the failed drugs she agreed. That is when we started to wean the steroid. The seizures increased with each decrease. By Sept. Kate could not even get up she was having so many seizures. Then the depakote went toxic. She would only lay on the floor and could not get up. She would sleep almost all day and night. I took her back to the ER and they admitted us. Her ammonia levels were at 189. They should be around 20. They took her off the depakote and then when she did wake up and we went home. We had almost a seizure a min. I took her back and they started us on the Ketogenic Diet. By December 2010 we had maybe 10-20 a day. By February we were seizure free. After 8 months we have had one seizure and that was last Tuesday. I know why she had it and fixed it. I am blessed to have family that has been on this journey with me while my husband was working in Arkansas. We are now all together. And although he missed almost everything we are stronger as a family. Also I could not have made it with out the other families in the Doose group. They are a great support group. Lori (Mom to Katelynn)