Mikaela's Epilepsy Journey

In November 2012 Mikaela’s parents were called to the school because she was having trouble remembering lessons from the day before, not acting like herself. Her parents could tell something wasn’t right. They took her to the hospital, after arriving at the emergency department the staff doctor was asking her questions. None of which could she answer appropriately, she could not remember her birthday, her parents or siblings names. The doctor ordered an EEG immediately. It was discovered that she was having an atypical absence seizure, that wasn’t stopping on it’s own, a state known as status epilepticus. The doctor contacted a pediatric neurologist at Childrens hospital in Omaha, the staff was preparing to have Mikaela flown to Omaha by helicopter. Instead of flying her the neurologist had her admitted to the local hospital in ICU, sedated and given anti-seizure medication. She was monitored and had EEG’s repeated several times until they could see that the seizure activity had stopped. Mikaela and her parents spent a week and a half in the hospital, while her pediatrician and the neurologist worked out a treatment plan for the seizures. They left the hospital with an appointment in Omaha.
Mikaela was diagnosed with Generalized Epilepsy. After she had an MRI is was discovered that she also had Chiari Malformation a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. And Syringomyelia which is the development of fluid-filled cysts within your spinal cord. She was referred to a pediatric neurosurgeon for treatment of the Chiari Malformation. In September 2013 Mikaela underwent surgery on her brain, a procedure called Chiari decompression. Surgery went well and her symptoms associated with the Chiari improved greatly.
Unfortunately her seizures continued. Over the last 5 years she has seen 4 neurologists, been given a multitude of anti-seizure medications, at times taking 3 different types at once. None of them controlled her seizures.
Last year they began seeing an epileptologist at UNMC in Omaha, in May of 2016 Mikaela and her Mom went to UNMC where Mikaela was admitted and put on a constant video-EEG monitoring/recording system. After less than 24 hours of being monitored the Doctor felt he had enough Information to understand and treat her seizures. Another medication change, they left hoping that they had finally found the right combination of medicine to make her seizure free.
Over the course of the next 12 months, Mikaela’s seizures became more severe occurring more frequently. She was having multiple absence seizures a day, lasting 30-60 seconds. At least monthly she was taken to the hospital by ambulance for seizures that lasted 10-30 minutes. Her doctor continued to try different medicines and combinations of them nothing was stopping them.
There were many other changes in Mikaela during the year too, the once happy, kind, caring, outgoing little girl everyone knew became quiet, withdrawn, depressed, she was angry, occasionally she would take her frustrations out on her family, she didn’t leave the house often. The child that loved going to school, hated it, she didn’t want to be there. Her grades plummeted, they thought it was combination of side effects of the medications and missing so many days of school. Some of her seizures have occurred at school, most of her classmates have always been very supportive and even a bit protective of Mikaela, we did find out eventually when Mikaela finally opened up, that there were a few girls bullying her. So on top dealing with with epilepsy, she had bullies, something she has difficulty understanding, the concept of hurting someone escapes her. Even her teachers, actually all the staff at her school have always gone above and beyond for her. They understand that along with a seizure comes retrograde amnesia, they would have to reteach her things again.
In March 2017 her epileptologist decided to repeat the long-term video/EEG monitoring. On May 1st  Mikaela and her Mom traveled to Omaha where Mikaela was admitted to UNMC hooked up to the video-EEG monitoring/recording system. This time they were there for 5 days. Once she was hooked up and the system recording it was discovered that she was averaging 15-20 absence seizures and hour, they are incredibly short lasting only 1-3 seconds. Her Mom said that they are difficult to identify, unless you were talking to her making eye contact to see her eyes go blank for a moment there was no other way to detect the occurrence of the seizure. Her Doctor started her on different medicines again, and advised her parents that he would be referring them to a colleague in Minnesota. 

That appointment has been scheduled for June 12th at 7:30 am. They are unsure how many days they will need to be in Minnesota, the person her Mom spoke to said that would depend on what the Doctor wants after her initial appointment, she stated that they should plan to be there for up to 10 days. 

When Mikaela’s journey with epilepsy started she was uninsured for about the first 6 months. The cost for prescriptions, tests, appointments, ambulance transports, and the stay in the hospital was thousands of dollars. Mikaela’s church helped with her first few trips to Omaha, and several prescriptions by a small fundraiser held for her. Which her family is incredibly thankful for. However Mikaela wasn’t the only one to have a ‘bad’ year in the last 12 months.

Her Mom, Mary is an EMT, that has both a full-time job and part-time job. Working for a medical transport company and a city 911 service. She was returning from a transport last August when the ambulance she was driving was struck by a semi truck making an illegal turn, the impact caused the ambulance to roll onto it’s top. Mary suffered a traumatic brain injury, a shoulder and back injury. Mary has still not been released back to full duty. Her Dad (Erik) in addition to having a full-time job, is also a firefighter, he volunteers in his local community, giving several hours of his free time to training and responding to calls. He recently completed his fire instructor course. He has been doing his best to keep up on the bills and the ongoing costs of Mikaela’s care. With the loss of Mary’s income from her jobs this has proven to be incredibly difficult. They need help to make the trip to Minnesota, and the overwhelming amount of debt incurred from Mikaela’s care.