Mikes call today was exactly what was needed, thank you. The conversation about something positive to look forward to, created a light on the horizon.
Kate has had a hard time this week, coming home early from school several days after multiple seizures in the first part of the day.
She broke down crying this evening after dinner, telling Barb she is tired of dealing with her “issues”.
The phone call with Dr Worrell yesterday have us the impression she is in favor of a surgical solution. We will likely travel to Mayo sometime soon for testing and conversations with a surgical team.
This morning before breakfast but after getting dressed Kate had a seizure that made her feel as though she was going to vomit. These are typical seizures for her.
A minority of the time she feels the sensation strong enough that she has to stand over the toilet or have a trash can next to her. This morning it was that higher intensity feeling accompanied by shaking in her arms and upper body. Barb said she had a similar shaking seizure while they were in the epilepsy clinic at Mayo.
– Kate started her period two days ago
– had a series of smaller seizures yesterday
– gave her .5mg Clonapin yesterday
Experiencing ends of a spectrum this week, I received a call from a collections agency this morning for medical associated with Kates care. The call came in while I was getting coffee from Cowgirl drive through… as I’m speaking with the collections agent about how we are going to pay, Harley from cowgirl asked me if I had a different credit card to pay for the coffee because card was denied.
A quiet deep breath, and I had to smile at the bitter irony of this moment in time.
This moment in time occurring congruently with the thousands of dollars being raised by Larry Parsons on Facebook to help with Kates medical bills. It’s a balance
Barb and Kate traveled to Mayo today for a three to five day EEG / Video study.
Kate has been getting throttled pretty hard since the first week of October with increased frequency and intensity of seizures.
We have run out of knowledge for how to address the daily seizures. The “rescue medicine” that we previously used once or twice a year has become a daily need. It’s no longer a rescue but rather a base line control.
This week in Rochester MN, we hope to learn more about the nature and origin of the seizures Kate is having. This knowledge will guide the creation of a new course of care for seizure management.
Kate slept until until 8pm, an hour longer than a usual school day. She commented that she “…still felt very tired” from the rescue medicine she received the prior two days.
We walked to school without any episodes and checked her into her classroom. The rescue medicine “hangover” for her is primary lethargy and a reduced attention span and memory recall.
Around 9:30 am she went to the school nurses office when a series seizures would not end. The seizures do not “present” in a physical way, there are no tonic clinic movements or eye deviation. Kate reports that she feels a general feeling in her body that is disruptive, accompanied by a nausea in her chest.
I was still at the school, talking with the nurse about Kate medical plan of action, addressing questions from the nurse about the prescribed dose of Klonopin.
I sat with Kate in the nurses office for 15 min, trying to get a better understanding for what she was experiencing during the “seizures that just keep going”. We elected to give her a .5mg does of Klonopin and she stayed with the nurse for a another 15 min to make sure it was working.
– .5mg Klonopin
At 11:30am the seizures started again, the nurse gave Kate an additional .5mg Klonopin and that broke the series.
– .5mg Klonopin
Kate at the end of the day today, silly, tired, just wanting to have fun.
Kate went to school on time, started having seizures around 9am. The nurse was in contact with Barb throughout the morning as the seizures persisted. The school nurse gave Kate .25mg of Klonopin as dictated by the frequency of seizures through the day. By 2:15pm Kate had been given 1mg of Klonopin since 9am.
The total amount for a 24 hour period ( Sunday 3pm – Monday 2pm ) 2mg Klonopin.
It’s a positive development that Kate stayed in school all day after taking that amount of rescue medicine. Her teachers as well as the school nurses have been remarkably accommodating the last three weeks. Kate has evolved to trust them more and feel more comfortable being vulnerable in that setting. In the past she had not wanted stay at school after taking her recuse medicine because of how it slowed her down and made her drowsy.
In 2017, Kate was in 2nd grade, spending 90% of her school day in special education classes at Muldown Elementary. She relished the time spent in her “regular classroom”.
Laura Raykowski was Kate’s special education teacher for 1st & 2nd grade. She was our first experience with the IEP ( Individual Education Plan ) that defines Kate in the eyes of the school system. Laura gave Barb and I confidence in the system, she was proficient, thorough and compassionate in her work…and Kate loved her.
The 2017 school year was when we started to get an idea for what Kate’s cognitive development looked like in the wake of her hemispherotomy surgery two years earlier. It was a big year for us, seeing growth in a positive direction, physically and intellectually. She was gaining weight at a steady rate after years of “failing to thrive” under the pressure of intractable epilepsy.
I will add to this chronology as time permits. In the interim a more detailed history is recorded at
Site Name: katecooke
Kate was awake last night ( Saturday night ) for about 2.5 hours, unable to fall asleep. She did not report any seizures during that time, Barb and I wonder about the “spike wave” seizures that Dr Worrell educated us about previously.
3:30pm series of seizures
– .25mg Klonopin given
– additional .25mg given at 3:45 for persistent seizure activity
UPDATE: 8pm 3 – 4 seizures while getting ready for bed
– .5mg Klonopin given to break the cycle. A full dose ( 1mg Klonopin ) within a 24 hour period makes it difficult for Kate to participate with school activities.
Seizures at school today
-.5mg Klonopin given by school nurse
Seizures intensified at bed time around 9pm, an increased feeling that she was going to vomit… to the point that Kate insisted on having a small bucket next to her bed during the night.