Reagan was born 3 minutes after her twin sister Ryan March 2005. Other than being a tiny 4 lbs she was off to a normal start. When she was 22 months old she began having infant migraines. She started on a beta blocker and continued until she was 5 1/2 years old. Enrolled in Kindergarten the twins were off to school and everything appeared normal.
December of 2010 Reagan had her first seizure and the roller coaster began. The morning of the first seizure I wasn’t sure what happened… so like any unsure mom and dad we sent her to school without telling anyone. That afternoon we sat in the doctor’s office and discussed our next steps. We all three agreed to let it pass and chalk it upas one seizure. 8:30 that evening she had her second seizure and the hospital visits began. We did an EEG and caught several seizures. After a couple of nights in the hospital we were sent home on our first seizure medication and tried to get them under control.
February of 2011 after trying 5 different medications Reagan developed a rash while taking Depakote. We decided to go cold turkey off of the medicine and after having 3-5 seizures per day we actually went 4 days without. Later we discovered that Red 40 triggers Reagan’s seizures and Depakote contained Red 40. We had 100+ seizures during the short period of time we were on Depakote. Although we were excited and felt like we could put our finger on some sort of reason we were quickly deflated when she started having seizures again (without any Red 40).
Next stop Cook Children’s Hospital in Ft. Worth, TX. We spent a week in-patient while under going several different tests called a "phase 1" workup. Conclusion – Partial Complex Seizures with Secondary Generalization. They can see where the seizures start but nothing shows up on the MRI. We proceed through the next two years trying different medicines. At one point we were having 3-5 seizures a month and only at night. Sounds great right?… Not good enough so we start changing medications. With seizure meds seems anytime you change medicine expect more seizures per the doctors.
May of 2013 Reagan started having seizures daily anywhere from 1 to 5 a day. In October we returned to Cook Children’s for another week of tests. During the week she had several seizures at all the right times. The test resultsshow seizure activity on the left side as well as the right. Again the MRI was inconclusive. Now we have been “stamped” with intractable focal epilepsy. We discussed options and really wanted to find a way to try Charlotte’s Web.
November of 2013 Reagan was having seizures hourly and was unable to walk or use her left arm. We spent a nightin the hospital getting a loading dose of Dilantin trying to get the seizures to stop. After 10+ days of hourly seizures they started to occur less frequently but still daily. Early December we meet with the Epileptologist and Surgeon at Cook Children’s to discuss options. Again she is not a perfect candidate for surgery but they are willing to try. With the Dilantin came insomnia, depression, and lack of energy. We knew we wanted to try something else.
January of 2014 we packed up and headed to Colorado. Reagan started Charlotte’s Web and from February 1st to March 3rd didn’t have any seizures. This was our first relief since May of the previous year. We had a few seizures during March and then discovered she was having a second type – Absence Seizures – new for us. A school teacher witnessed this. For me it was a 9 year old that zoned out – much harder to catch. During the summer we weaned off Dilantin and have only had 5 seizures since finishing the meds. She is currently only on Charlotte’s Web. She is bubbly, depression gone, sleeps great and gives her twin a run for her money. Her smile is back and she is happy. We are 5 weeks seizure free and doing great.