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.
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…
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.