Tag Archives: seizures

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?




April 15 2013

We met withe Kate’s pediatrician on Thursday, April 18th, to discuss the EEG results from April 16th and sort out a plan for addressing her seizures. We are working on getting an appointment with the neurology team at Seattle Children’s Hospital as soon as possible. We have a previously scheduled checkup with the surgical team in May, but neurology is proving to be a challenge, with appointments available starting in August.

Until last week Barb and I have been primarily focused on learning about the potential issues related to shunt failure and identifying the symptoms that would help us react appropriately. We have been looking at Kate’s issues with the understanding that an increase in cranial pressure due to shunt failure would be at the root of the issues.

Historically we have attributed the sequence of symptoms, agitation, vomiting, nystagmus, etc… to potential shunt failure, this resulted is an incomplete understanding. The symptoms never lined up correctly to clearly indicate her shunt was not working. The EEG results and a review of the video from the ER Sunday night let us know we need to look at seizures along with the potential increase in cranial pressure as a source.

Prior to April 15th, what I had interpreted as nystagmus attributed to an increase in cranial pressure, is shown in the video to be a rhythmic pattern of eye movement in sync with her right arm contractions during the seizure….this is a painful point of increased understanding. Good to know what is actually happening and be able to address it accurately, difficult to process that we have been reading her symptoms incorrectly for 24 months. The incomplete interpretation of Kate’s symptoms have guided her course of care in the ER on several occasions and informed decisions about revising her shunt surgically in October of 2012.

Roughly 72 hours after the re-introduction of Keppra we saw a decrease in lip smacking while sleeping and daytime retching as part of Kate’s “episodes” where she reports to us the urgent need to throw up. It seems notable that she has this feeling frequently and never actually throws up. Prior to Keppra, she would have episodes where she would insist on having a bucket to throw up in, at times walking around the house with it until she felt better.

The last three months she has had good days and bad days. On good days she would have two or three episodes while bad days were ten to fifteen episodes. The most concerning episodes are when she will suddenly stop playing, and climb up on Barb or I and tell us she feels sick, then fall asleep on our shoulder in the middle of the day, not in a typical nap time.

This morning she had the first episode in a week, letting us know that we need to push for an increased understanding of what the symptoms are telling us about Kate’s neurological wellbeing. Additional EEG studies at Seattle Children’s or a comparable facility will hopefully give us an understanding if the retching, nausea episodes are a low level seizure or an indicator of the potential onset of a seizure and what expectations we should have of the medications ability to address what we are seeing.

We are working with Kate’s local pediatrician, Dr Graham, to schedule the neurological appointments as soon as possible. At this time we hope for greater understanding and an increase in our peace of mind with regard to what Kate is experiencing and our ability to respond correctly.

Thank you for the enduring support, please share our love with the ones you love.