2020 UPDATE: Kristi officially became a teenager on January 30th and seems to be thriving in middle school. She is surfing weekly (through the cold winter water); playing tennis a few times a week on the LaCosta Junior Tennis Team; and playing piano in a rock band at her music school! We are extremly proud of how she has been able to persevere through the daily challenges of epilepsy and the many invisible side effects.
As of February 10th 2020, Kristina continues to take Onfi (Clobazam) and experiences few absence seizures daily. They are too quick for anyone except her parents to notice and fortunately do not disrupt her thought process. If she has triggers such as lack of sleep and/or poor diet the seizures last longer and are more frequent :(
Please join us as we fight this monster called epilepsy! We have found a family in the Epilepsy Foundation of San Diego as they have offered us a community of counselors, mentors and HOPE. Please make a donation and/or sign up to join us at Mission Bay on April 19th for what should be a beautiful morning.
Thank you, with much love,
Margie, Mike and Kristi
Below is a brief history of Kristina's experience with epilepsy to date.
Our daughter Kristi was diagnosed with absence seizures at the age of 2.5 years old. At 3.5, after 3 failed medications and a tonic clonic seizure that required a helicopter ride to the children’s ER, we finally found that Depakote would control her seizures. This medication altered her personality almost immediately but we had little choice but to leave her on it with the hopes that she would eventually outgrow the seizures. As Kristi was turning 4 and again 5 she had breakthrough seizures that were quickly corrected with an increase in her Depakote dosage. We anxiously awaited to see if breakthrough seizures happened again at her 6th and 7th birthday, but they fortunately did not.
After 2+ years of no seizures her neurologist did an EEG to be certain nothing subclinical was happening. We weaned her off of the Depakote slowly; it was an agonizing process as Kristi felt sick and tired. When we were close to the end we rejoiced as Kristi became “alive”. She blossomed as she grew more confident and silly. We thoroughly enjoyed getting to know our daughter in a new light and had a fabulous summer and beginning of second grade.
Unfortunately, during the long holiday break from school during second grade, we saw reasons for concern. A few days into 2015 we brought her to the hospital and it was determined with an EEG that her seizures had returned. We were all very disappointed and Kristi was angry. We explained to her that we all hate epilepsy and we will fight together as Team Spitzmiller always does. With Kristi’s neurologist’s guidance we tried some holistic approaches including Charlotte’s Web, which is very high quality medical cannabis oil. After almost a year we determined that it was not working for Kristi.
In 2016, we noticed more eye fluttering and in August that year, Kristi was diagnosed with Jeavons Syndrome (Eyelid Myoclonia with Absence Seizures). After a neuropsychological evaluation, we were advised to get the seizures under control for many reasons. Then we faced the difficult decision as to what medication to try. We struggled to even go back to pharmaceuticals but there is only a very slim chance that Kristi will ever outgrow her seizures and be rid of epilepsy forever. Although Depakote is the most recommended medication for this type of epilepsy, we were extremely hesitant to go back to it, and because she is almost in child bearing years (WHAT??) it was not advised. So we decided to start her on a medication called Clobazam. In the first week Kristi had awful headaches (not sure if they were migraines) and extra sensitivity to light among other things. Now, after a month, the headaches are not as bad but she concerns us as she complains that she is dizzy sometimes. Despite the few new side effects Clobazam seems to be helping Kristina's thought process and focus.
As of February 10th 2020, Kristina continues to take Onfi (Clobazam) and experiences few absence seizures daily. They are too quick for anyone except her parents to notice and fortunately do not disrupt her thought process. If she has triggers such as lack of sleep and/or poor diet the seizures last longer and are more frequent. :(
Thank you for taking the time to read this. xox