Welcome to our CaringBridge site. We started this journey on February 21, 2013 when Katelyn had her first Apnea Episode which was later diagnosed as a seizure. She spent 80 days between her birthday, February 19 and June 6, in three hospitals trying to gain seizure control and find the underlying cause of the seizures.
After extensive testing, nearly every cause has been eliminated. Now we accept a diagnosis of intractable epilepsy (uncontrolled seizures) assumed to be caused by a very rare genetic disease that has not been identified or has not even been named a disease yet. *2019 Update. The disease is KCNT1-Mutation and wasn't discovered until 2012. It was found through exome sequencing.
We spent half of 2013 trying to prove that her life wouldn't be measured in months but years. After small developmental improvements overcame the previous declines, we're now planning for years!!
We started the Ketogenic diet January 2014 at St. Paul Children's Hospital and continue on four seizure medications - Lamictal, Felbamate, Topamax, and Clobazam/ONFI. We've tried and eliminated treatments such as ACTH, Phenobarbital, Keppra, Depakote, Neurontin/Gabapentin, and Dilantin because of ineffectiveness or negative side effects.
Katelyn continues to have seizures every day. At our worst (May 2013) the EEG count was 160-200 a day. In January 2014 doctors saw 100 a day including infantile spasms seen only by EEG. The exact number today doesn't matter. We have three pretty awesome kids and a house filled with faith and love.