Doose Syndrome and the Ketogenic Diet

Article submitted by parent and reprinted with permission:
Oh yes I have a story. Last March my husband got a job in Arkansas and he moved while me and our girls stayed in Dallas another week. We moved a week later and we went to eat at a local restaurant and our daughter Kate fell back and her drink went flying. My mom and I talked and thought it was probably a seizure. I was going to take her to the doctor but with just moving and no insurance here we were going to have to go back to Dallas.
I thought if it didnt happen again I would wait until we had insurance here. A week later the girls got up at 6:30am and we were all in the livingroom when Kate was pretending to be a dog and she stopped in front of me and fell over. I thought she tripped on the bean bag chair. When I looked down at her she was having a GTC.
We went straight to the emergency room and they said her temp was 99.5 and it was due to the slight temp. Her last seizure from fever was 104.8 so I knew it was more. As soon as we got home from the ER I packed our car and me and the girls went to Dallas. On the way she had a ton of smaller seizures and in the middle of nowhere in Oklahoma she had another GTC that lasted 3 min. I pulled over got her out of of her seat and on her side until it finished. When she was done I took off faster than before.
I met my parents and inlaws at Childrens Plano. They got us right in and she had another 3 min GTC. After a battery of test MRI’s, CT and blood work we were sent home on Keppra (not a high enough dose) for the next 3 months we were in and out of Childrens Dallas ER. In April we did an EEG and got the diagnosis of Myoclonic Astatic Epilepsy (Doose Syndrome). In May they added Depakote and that stopped the GTC but she was still having tons of all the other types of seizures and most were drops.
In June we started Steriods and in July had 5 days seizure free. And then back to hundreds of seizures a day. In Sept the Depakote was going toxic in her system and she would not wake up. We spent 80% of September in the Hospital.
We started the Ketogenic Diet at the end of Sept and by December we were seizure free. In January we had a few GTC for a week due to a medication wean. We are now seizure free and we hope to stay that way. I am not stupid though I know they could start again any day. I just keep my faith in God to heal her.
Lori Gutierrez
About Arlene Martell

Arlene Martell is the publisher of EpilepsyMoms.com and the author of Getting Adam Back – A Mother's triumph over Epilepsy and Autism. She resides in a seaside suburb on Vancouver BC Canada with her husband James and their four children Adam, Justin, Shelby and Victoria.