Kate's Story: Part 1

Today, we have a special guest! I wanted to give insight for all our friends, family, and followers into the journey of another family whom we have thankfully "met" during Renn's journey.

Michelle is the mother of this beautiful little girl-

 

This is Kate. And in July of this year, she underwent the exact same surgeries that Renn will endure, next week. I wanted Michelle to share Kate's story, and how they came to the decision to go through with surgery, and how it has changed their lives. Just like ours, their journey has been long and tedious. So naturally, I will begin with part one, and tomorrow I will post part two.

 

Thanks, Michelle! Share away!!

 

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Earlier this year, I stumbled on a Pinterest pin that connected me to Bethany and to this blog. After years of struggling with the challenges associated with my daughter’s seizures, I was equally happy and sad to find another mother facing a similar battle with Epilepsy.  Kate and Renn are the same age, both have Complex Partial seizures focused in the right temporal lobe and both were on the path to brain surgery.  We may be separated by nearly 3,000 miles, but Bethany has become a treasured friend and inspires me to stay strong and love more despite the difficulties we face on this journey. I’m honored to share Kate’s story because she, too, inspires me with her strength and resilience every day.

Three years ago, we were the typical family of four living in the suburbs of Washington, DC.  Life was full of the normal craziness that comes with trying to find some amount of balance in the work-life equation. Then it all changed.  The first seizure came three days after Kate’s 3^rd birthday.  She had been sick the week before, and was still home recovering when she appeared to be choking and then lost consciousness.  My husband, Joe, was with her and he was terrified.  Like me, he had never witnessed someone having a seizure and didn’t realize what was happening. Thinking that she might be suffering from dehydration, Kate was hospitalized and had another seizure early the next morning while I was with her.  This time a nurse was there and recognized that was happening. Within hours, Kate was transferred to a larger regional hospital for more specialized care.  

Kate was started on Dilantin (the first antiepileptic drug or AED) but continued to have breakthrough seizures. During those two weeks in the hospital, Kate endured a CT scan, 2 MRIs, multiple EEGs, a spinal tap, and daily blood tests in an attempt to find some answer to why these seizures started in a kid who didn’t have previous medical issues and had been meeting all of her developmental milestones on-time.  When the first drug was unable to control the seizures, Kate was moved to the Pediatric ICU and Phenobarbital (#2) was added.  This medication put her into a drug-induced coma for two days in order to calm down the seizures.  In the PICU a pediatric neurologist explained that since two AEDs failed to control her seizures and because there was no clear understanding of why they started, there was a low probability that we would find an AED that would stop the seizures.  This neurologist was also the first one to mention the possibility of brain surgery as an option for seizure control.  This would also be the first time, Joe and I wept together over Kate’s condition.  Unfortunately, it wouldn’t be the last.

The most troubling characteristic of Kate's seizures was that her respiratory rate would drop, she'd turn blue and "destat." Unfortunately this would become a common trait of Kate's seizure presentation along with stiffness, jerking movements, and drooling. The seizures would also predominately take place during sleep.  Because she couldn’t be released until they found a combination of AEDs that could provide a comfortable level of control, Clonazepam (#3) was added to her AED regimen.  We didn’t care what it took.  We just wanted Kate out of the hospital.  The clonazepam finally calmed things down, so she was released with oxygen tanks and a rescue medication called Diastat (#4) to be administered when seizures lasted longer than 5 minutes.  To be honest, we still naively hoped that the seizures would stop as mysteriously as they started.

The first year of Kate’s diagnosis of Complex Partial Seizures was challenging.  The medications decreased the occurrence of the seizures from daily to (at times) weekly.  Although they would always show up without warning, the majority of seizures still occurred during sleep. We were so fearful of Sudden UnexplainedDeath in Epilepsy (SUDEP) that Joe or I slept with Kate every night and stayed nearby during naptime.  New AEDs were added and subtracted to the mix and my sweet girl was ravaged by both the torture of the seizures and the side effects of the medications.  Dilantin and Clonazepam made her act like a drunk. Keppra (#5) offered no improvement.  Depakote (#6) gave her an insatiable appetite and she gained 25 lbs.  Topamax (#7) reduced her language ability and cognitive development.  Overall, the AEDs made her dizzy, unfocused, and confused.  While her peers were learning new skills, Kate was falling behind, developmentally.  Despite the serious side effects, Kate was “blissfully unaware” of her condition.  Perhaps due to a combination of her age, reduced cognitive awareness and because most seizures happened during sleep.

Because the AEDs were not proving effective, our neurologist referred us to an Epileptologist at Children’s National Medical Center in Washington, DC.  This doctor not only specialized in treating Epilepsy, but also managed surgical candidates.  We still weren’t sold on the idea of brain surgery, but we knew Kate needed new options and even contemplated the Ketogenic Diet. Considering the type and characteristics of Kate’s seizures, the specialist thought that Kate may be a good candidate for surgery.  The surgical evaluation process is designed to rule out certain factors while collecting useful data on seizure activity.  We began with a 5-day Video EEG, a new MRI, and genetic testing.  Unfortunately, these studies take a very long time to schedule and it takes even longer to receive results.  By this time, nearly a year had passed and Kate’s seizures started happening while Kate was at daycare.  First it was during naptime and then it happened while playing on the playground.  We were fortunate that the daycare had been so supportive of Kate’s needs, but these changes frightened us.  It was time to step things up, so I took a leave of absence from work to care for Kate and aggressively pursue further testing for surgery. 

Up to this point, every MRI failed to show any signs that might be linked to seizure activity – no lesions, tumors, cysts, or abnormal tissue.  If it did, the surgeon would know exactly where to go and what to remove.  In cases like Kate and Renn’s, it’s like searching for a needle in a haystack.  The objective is to eliminate a majority of the haystack during your search.  During Kate’s second VEEG, multiple seizures were captured and, for the first time, the seizures appeared to be occurring in the right temporal lobe.  The location was further confirmed by a PET scan.  We were finally hopeful that we were on the right track.    

Because the side effects of Depakote and Topamax were so detrimental to Kate’s development, they were removed and two new drugs were added:  Trileptal (#8) and Lamictal (#9).  It took a while to tweak the dosages for Trileptal because it would make her fall asleep within 15 minutes of taking it.  The lamictal doses had to be slowly raised to ensure a deadly skin rash, called Steven Johnson’s Syndrome, didn’t occur.  While the new drugs appeared to be working well to control Kate’s seizures, Kate’s emotional behavior and developmental delays were still troubling.  After taking her out of the daycare she loved, I tried to find a pre-school program to keep her socially active and provide some learning activities.  Many pre-schools in our community would not accept Kate due to her medical condition, or wouldn’t agree to administer Diastat if a seizure occurred.  Fortunately, she qualified for a county preschool program for children with developmental delays and it was a great fit for Kate. 

In the fall of 2011, we met with a neurosurgeon for the first time.  She agreed that all of the testing indicated that Kate would be a candidate for Epilepsy surgery.  The neurosurgeon was really good and gave us a sense of confidence that we needed.  Still, we did more research, spoke to other parents of children with seizure disorders who had undergone surgery and also went to Johns Hopkins for a second opinion.  It wasn’t easy, but we made the decision to go for it and the surgery was scheduled for early December.  Then life threw another curveball.  My father-in-law was diagnosed with cancer and his health was deteriorating fast. We decided to put surgery on hold until things calmed down. Unfortunately, he died on December 1.  It was such an overwhelming time, especially for my husband and his family in New York. 

In the midst of everything, we realized that Kate was having fewer seizures.  Between November and January, she had just two seizures.  This was the longest stretch she had ever gone without having seizures.  Maybe the drugs were starting to control things better?  It was even suggested that maybe she was “growing out” of the seizures.  Something that we had hoped and prayed to happened. Regardless of why, it was a much needed development and we happily put the surgery on an indefinite hold.

The seizures came back when Kate started kindergarten and I started back to work.  (Perfect timing, right?)  This time they didn’t occur just during sleep.  They came at any time, day or night.  We were incredibly disappointed.  Because of this re-emergence, a new drug (Onfi #10) was added to replace Clonazepam.  It was no surprise that kindergarten was difficult for Kate.  Because of her developmental delays, she was placed in a non-categorical special education class.  The class worked much better for her because there were only 7 kids in the class, but she continued to struggle with basic things like writing her name and drawing.  Intellectually and emotionally, she was still 3-years old. 

Joe and I knew that we had to re-consider the surgical option...

 

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Stay tuned for Part 2, tomorrow!