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.