Category Archives: Kate

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.

Stress: smoke and mirrors

I bury my fear and anger in physical activities, alpine touring and cycling. Continually refining the tools required for these activities creates a sense of improvement and preparedness for this small aspect of life, training, researching gear, fills the larger void of knowledge and preparedness with regard to Kate. Planning a glacier crossing in British Columbia or training for CX Nationals in Austin Texas provides a set of challenges with clear options, solutions and measurable goals with relatively inconsequential liabilities. Complete failure at CX Nationals has little or no down side, finish last and still have a great experience, dust off and get ready for next year.

Along with the pattern Barb and I see with Kates well being, a pattern in my behavior has emerged. When Kate shows the first signs of a down turn I make a concerted effort to get as much sleep as possible until her symptoms degrade to include sleeplessness. Then I shift gears, to deal with the sporadic sleep Barb and i get during this phase, I research some made up “need” that provides a glint of promise to improve my Alpine Touring experience or ability to go fast on a bike. I look for improved skis, boots, bikes, clothes, beacon etc… study more avalanche reports. Fabricating new goals provides two things:

a distraction from my inability to help Kate when she feels awful and has headaches that last for days.
provides a focus for the hours spent awake each night in an attempt to comfort her in the absence of a real solution. I sit awake with an iPad in my lap and incessantly read through tech specs and gear reviews in the pursuit of “better”.

We brought Kate home for the first time in March 2010, Barb and I took turns staying up with her at night, I spent the awake time researching seizures, medications, medical facilities, doctors etc. After three years filled with incremental improvements in our understanding and ability to “manage” Kate’s needs, I find myself hiding from my inability to “fix” Kate. Stuffing my frustration into the bottom of a backpack and hauling it to the top of Big Mountain like Sisyphus.

Kate is in a great zone, she has been free of retching and nausea for almost a week. She is happy and engaged, enjoyed her day at school, this is what she deserves.

Since I wrote the previous sentence on January 8th, Kate has been down and up and back down again. She is in a vague cycle that seems to trend on roughly a two week pattern where we see two weeks of good appetite, great disposition, active, energized play and good sleep at night. This is followed by a gradual decline of her general wellbeing, it starts trends like this:

slow decline in appetite
restlessness at night
increase in anxiety
retching, nausea, decline in balance that increase in severity and frequency over a three to five day period.
“spells”, possibly small seizures: shaking, rigid physical posture on her right side, smacking her lips, fatigue, unhappiness. “I want to go home”, ” I want to go to sleep”
the inability to sleep at night for a period longer than about 20 to 30 minutes without retching, leads to fatigue and irritability.
anxiety about going to school and or an uncharacteristic fear of the dark
this build up can end at this point or has culminated with a “Partial Complex Seizure”, requiring the use of pharmaceuticals (Valium, Ativan, Keppra…) to break the seizure.

When these symptoms subside we see a rapid return to her positive baseline in a two to three days:

increase in appetite
sleeps through the night
anxiety about going to school or fear of the dark is completely gone
happy
engaged
active play

Today we are enjoying the latter sequence, counting the good days since her last down turn in an effort to better understand her needs, prepare ourselves for the next shift in the pattern and to remember to enjoy the good days today. Kate deserves better, her sisters deserve better.

Science

Progress.

http://www.salon.com/2013/08/17/science_for_stoners_heres_how_pot_works/

Controlling the “learned” mental response or behavior is a foundational aspect of the seizure management mindset in western medicine. The scientific points made in the article line up with the accepted strategy to use pharmaceuticals as inhibitors to stave off what could become a “conditioned response” that develops a propensity to have seizures.

The thinking behind using inhibitors (*anticonvulsants like Keppra, Phenobarbital…) was described to Barb and I in simple terms, that the more a person has seizures, the more likely they are to have additional seizures, it becomes a learned behavior over time.

*Levetiracetam is an anticonvulsant medication used to treat epilepsy. It is the S-enantiomer of etiracetam, structurally similar to the prototypical nootropic drug piracetam. Levetiracetam is marketed under the trade name Keppra. Keppra is manufactured by UCB Pharmaceuticals Inc. Since November 2008 the drug has been available as a generic brand in the United States.

*Phenobarbital is a barbiturate, nonselective central nervous system depressant which is primarily used as a sedative hypnotic and also as an anticonvulsant in subhypnotic doses.

Quality of Life…

Barb and Kate returned from Seattle mid day on thursday July 4th. They had been at Children’s Hospital for a 24 hour EEG study that includes video.

Kate had been progressing down a path since her first vomiting episode on June 29th, the retching, sleeplessness and agitation increasing in frequency and severity to the point of her spending the entirety of Monday on the sofa crying or yelling at her big sisters.

Once they returned home, Kate was almost four pounds lighter and exhausted. She slept a lot over the next three days and her apatite gradually increased. Her general positive demeanor returned as she gained weight and slept. We are fortunate to have her back to her positive baseline well being, happy, energetic, loving.

We have enjoyed the relative stable two weeks since then with only intermittent retching and three to four anxiety points during the day. When she is not doing well, she feels nauseous and panics and needs her “bucket” feeling sure she is going to throw up. When she has these waves of nausea she stops whatever she is doing, playing, watching a movie, wakes up from sleeping and desperately needs her bucket. Occasionally she has an episode that includes shaking or shivering, and lip smacking, and she will communicate that she feels cold.

She typically retreats to the sofa or into our arms if we are close as the feelings subside. It’s heart breaking when she feels this way. She deserves a better quality of life.

We are taking a renewed approach to Neuro-development appointments at Seattle Children’s with a focus on her base line well being. We are targeting fewer conversations with surgeons and a greater familiarity with a “home base” pediatrician to understand the whole picture.

Kate is a wonderful little person, witty, thoughtful and loving, our goal is to empower the supporting medical community to help her make the most of who she is.

Quality of Life

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Barb and Kate traveled to Seattle this morning for an appointment with the neurology folks at Seattle Childrens Hospital to have an EEG study. The study will measure electrical activity while capturing video of her at the same time, to reference any physical signs of seizures.

Since the study was scheduled a month ago, Kate has had waves of nausea and general downturn in her wellbeing that last for five to seven days. Saturday night she started vomiting and has not been able to sleep at night, waking up five or six times a night with bouts of nausea.

Yesterday Isabelle, Paetra and Barb rode bikes to Sweet Peaks Ice Cream after dinner, while Kate and I walked with her in a stroller. When we arrived Kate was uninterested in ice cream and asked to go home, the signal was clear. Her disposition is heavy and agitated, crying and miserable throughout the day sunday and yesterday. Our goal is to create a higher quality of life for her, she is smart and capable when not weighed down by the unresolved issues, she deserves a better shot at life.

We are hopeful that the EEG provides an increased degree of understanding for the origin of her smaller seizures and points us in a direction of addressing her baseline well being.

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.

Chance

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