Tag Archives: Epilepsy

19 Days

What can we cram into the next 19 days?

Well founded or not, Barb and I feel that a significant threshold will be crossed on April 15th 2015. I have heard myself refer to “life on the other side” of the surgery. The Hemispherectomy planned for Kate carries expectation and anxiety that life will forever be changed for each of us.

imageKate’s life will be radically changed, in several ways, some hopeful some concerning. The best outcome provides a vision of life without seizures and a bright developmental future where Kate is allowed to grow and thrive unimpeded by intractable seizure and sleep deprivation.

This will be the final post on this blog before the surgery, I will update Kate’s Caring Bridge site to share the process with family as it progresses.

Visit Kate’s Site: https://caringbridge.org/visit/katecooke

Site Name: katecooke

Mayo 03/10/2015

Returned to Mayo Clinic in Rochester MN with Kate on Sunday night.

She will have two MR scans to asses risk with regard to surgical options to resolve her seizures.

Tuesday is the MRv to asses the state of the Venus sinus thrombosis from the initial stay in Seattle.

Wednesday is the functional MRI to asses the location of her speech center, right or left hemisphere.

The MR tech will be the same for both and she is great, she wanted to do the MRv without anesthesia, tried it, but Kate is having to much anxiety, she could not calm down enough to get good images.

Mike and I are waiting in the recovery area where Kate will be brought to when the scan is done in about 20min.

The failure to make it through the short MRv without anesthesia does not bode well for the Functional MR tomorrow. If she is not able to complete the MR tomorrow, we will be headed towards the WADA test that introduces greater risk to get at the same answers.


Big Sky Intervention

Mission accomplished, thank you Mike and Gale for the vehicle, equipment, financial and emotional support. The trip to Big Sky was the the perfect remedy for the whole family after Barb and Kate being at Mayo Clinic for a week and half.

Being in Big Sky for the weekend, removed from all the trappings of home, surrounded instead by family, friends and the beauty of the Rocky Mountains. We focused our energy on Paetra and Isabelle with the help of the ski team community. The hurt and fear they experienced from Kate and Barb being away faded into the fabric of the weekend. The interweaving of races and family meals created a shared set of goals that brought us back together in a rapid and concise way.

Twelve hours together in a car over three days was a bit much, but it worked. The further we got from home the problems and concerns Paetra and Isabelle had built up faded. Getting out of the familiar environment and breaking the routine of home accelerated their ability to let go of what they had built up inside.

Paetra and Isabelle were forced to leave behind the feelings of sadness and neglect from the weeks prior. The races gave us an opportunity to put them back on center stage, within the context of their friends, and an activity they love.

The weekend felt like it was tailor made for our benefit, the distance from home, the hyper focused setting of the kids races and the community support for Kate made it feel like a three day therapy intervention.

New helmets, boots, speed suites and legitimate race skis gave the big girls a sense of purpose. They embraced the gear and the opportunity to apply what they have learned from their coaches to achieve a new standard of personal performance.

Paetra rose to the challenge on her final slalom run of the weekend, laying down a time that was faster than all but two of the girls in her U12 group. It is notable that she is the youngest and possibly lightest athlete in the group. Lighter than the top girl by 50 to 60 pounds, significant in a gravity sport. Her final run was benefitted by several pep talks from different parents and coaches that took her aside to work on letting go and having fun while she raced. She knew she could ski faster than she had in her first three runs but needed help finding her way. A small but significant personal measure of success was recorded when her final time was faster than her younger sisters. This fact was more significant than beating the majority of the girls in her age group.

Isabelle has become the standard for success, winning all four of her races this weekend by 4 to 5 seconds each while recording times that would put her on the podium in the the next two older age groups.

Isabelle is fiercely competitive, vigilant with details and race preparation. These traits combined with proper gear set her apart from her competition all weekend. Bayard predicted this outcome last year after she did one race on good skis.  I was guardedly proud of how she competed and delivered the beat down, but most proud of how she behaved in the limelight, exhibiting respect and humility beyond her years.

Barb was a superstar all weekend. After an exhaustive week and half living in the epilepsy ward of the Mayo Clinic, watching Kate go through hell, Barb jumped back into family life. Providing love and support for us all with no hesitation from fatigue or depression.

The regiment of Kate’s testing last week was terribly difficult on both of them. The need to record her seizure activity using 24 hour EEG and video monitoring was trying. Kate was not allowed to leave the bed where the video was recording for five days. Add to that, an abrupt 50% reduction of her anti seizure medication. Barb had to watch helplessly as Kate experienced a sequence of seizures each night that grew in frequency to around fifty in an eight hour period. Understanding the importance of these tests only gets you so far… the gap between intellectual understanding and the ability to handle it emotionally is vast.

The EEG results will be the foundation for a surgical recommendation from a team of advisors at the Mayo Clinic. We are living in an odd space for the next week while we wait for the committees review and recommendation. Knowing the implication for the result of the tests but not having the formal conversation about scheduling a surgery or seeking a second opinion…we are in a zone of suspended reality. Not having to face our fears of the surgery and the risks it brings but knowing full well this is the likely path.

More now than ever, I hold Kate a little closer, hug her a little longer, look into her eyes as she speaks with me. I want to hear her and see her with a lasting clarity as she is today, full of wit and humor, a vibrant engaged 5 year old. I am irrationally frightened by what waits on the other side of the phone call with the team at Mayo this Thursday. Knowing intellectually what is best for the “future Kate” I struggle with the potential impact for the surgical path we are on. There is an unsettling permanence to the procedure without the guarantee of a successful outcome.

Ten Questions

Ten questions to expel the ignorance and fear: “peri-insular hemispherectomy”

  1. What are the risks associated with this specific procedure?
  2. What is the expected or typical medication for seizures look like after this procedure?
  3. Please provide reference material for the surgical procedure that will help us understand the details of what will be done?
  4. Where can we read about case studies for patients that have had this surgery that cover a spectrum of outcomes?
  5. What are the results of the behavioral study Kate completed on January 13th at Mayo Clinic and how does that inform the decision making about the surgical option?
  6. What is the likelihood or percentage of stroke during this specific surgical procedure?
  7. Specifically who will be doing what part of the surgery, who is the surgeon going to be?
  8. Will there be surgical residents / fellows present during the surgery and how are they involved? (Who does what, who will touch Kate during the surgery?)
  9. What is the time frame for scheduling the surgery?
  10. What is the duration of recovery after the surgery, in hospital and at home?



Ignorance and fear:

Barb and Kate have been at the Mayo Clinic in Rochester MN since Tuesday January 13th for behavioral evaluation and an extended EEG study. The goal is to identify the origin of the seizure activity in her brain and identify an informed course of care.

After living in the observation lab (hospital room) at St Mary Hospital (part of Mayo) they have collected enough seizure information data to make a recommendation for a surgical option. In order to accelerate the information gathering, Kate’s seizure medication was reduced by 50% the second day of the study and reduced again the next day.

The smaller seizures increased in frequency and intensity over the three day period, Kate has been miserable throughout the process. Along with the seizures she experiences periods of intense anxiety and anger. The “spike” activity recorded during these periods has confirmed the origin of the seizure activity. The larger “Partial Complex” seizures were not captured on EEG, this was an initial goal of the study, to insure a consistent source that might be addressed with a surgical solution.

Today, Monday January 19th (Paetra’s Birthday) the doctors are re-introducing Kate’s combination of seizure medications at the full dose to provide her some relief from the continuous seizures of the last five days. The neurologist Dr Wirrell, is satisfied with not pursuing the triggering of a larger seizure (Partial Complex) in the interest of recording it. She is satisfied with the data collected to this point and feels the medical team guiding Kate’s care can make an informed decision / recommendation with what has been collected to this point.

The prospect of the surgical procedure scares me in a deep way, at this point and I am struggling to develop a set of knowledge and coping skills to insulate myself. Without them I run the risk of falling apart at any point in the day when the thought of it takes me over. Ignorance and fear are my opponents.

Barb and Kate will hopefully be traveling home to Whitefish on Tuesday or Wednesday to rest and recover from a tough week in the hospital. Paetra and Isabelle are scheduled to compete in an alpine ski race in Big Sky Montana this weekend… will be a stretch to make it all happen. Understandable they are scarred for Kate and want the girls home soon, but also disappointed at the prospect of missing the race they have been training for since early December.




Varsity Level

Reviewing the notes from last week at the Mayo Clinic in Rochester MN. Kate had completed a one hour EEG and we meet with her neurologist Dr Elaine Wirrell for the second time.

After education Barb and I about what she was seeing on the EEG, Dr Wirrell narrowed the conversation down to two key points:

#1 Intractable focal epilepsy
#2 Continuous spike wave in sleep

This is remarkable for us. We worked with medical professionals from Tampa Florida to Seattle Washington without gaining ground on a cause. Kate has had over 30 hours of EEG / video recordings collected in the last two years and no one has been able to connect the dots until now. The folks at Mayo identified a significant issue after one hour of observation. Barb and I were floored by the efficiency and competence.

We will return to Mayo Clinic next month for a more focused monitoring to confirm the origin of the “spikes” seen in Kate’s EEG. The monitoring will include “inducing” seizures by dialing back her medication. Intellectually I understand this approach…





Perception of Control

After five days of gradually increasing anxiety, causing sleepless nights, loss of appetite, and vomiting Kate had a generalized seizure that required a dose of Valium to break through.

Kate’s doctors have consistently reinforced with us the role that fatigue plays with regard to the onset of seizures. Today’s seizure fits the model / trend of physical and mental fatigue as a contributing factor. There were smaller seizures lasting two to three minutes starting last weekend. Her inability to sleep at night seems to come from anxiety or anxiousness that wakes her up around the same time each night (2am). In the early days of the cycle Kate will go back to sleep at 5am or 6am for an hour or two. When the cycle is at its worst, five to six days into it, she will not go back to sleep at all. Staying up from 2am until a nap mid day. A four year old should not be able to get by on 6 hours of sleep… and she doesn’t. Her behavior turns dark and occasionally violent with her sisters and her mother, lashing out, hitting scratching, punching, unprovoked.

The seizure today was unsettling and frustrating, reinforcing the sense that we have no control over her well being. In an effort to create more understanding we are traveling to the Mayo Clinic in Rochester MN December 3rd.


Kate is currently resting at home with us, safe but exhausted, sleeping off the effects of the Valium and hopefully rebuilding her strength.