Episode Description

In some of the posts you will read on this blog – including the last one “Strategically Strong”, I will often reference KK’s ‘episodes’. These episodes are part of the cluster of symptoms of her disease. Her is a brief description:

KK has had more than 30 episodes since the age of 9 months. Her episodes start with fatigue and lethargy. She may also have some type of ‘focus’, e.g. a cold, though this is not usual for KK.  She will stop eating and drinking, and her color will change to be very pale with a tinge of grey around her nose and lips. She may have intermittent fever in the first 24 hours.  KK suffers from Cyclical Vomiting Syndrome Plus* (CVS +) and as part of her episodes, she will begin to vomit with great fequency. KK often has gastrointestinal symptoms during an episode that manifest as consipation and GI discomfort/pain. She will also become quickly hypoglycemic and will either maintain or increase her frequency of urination due to an inability of her kidneys to concentrate urine. KK will often experience pain during her episodes, though it is non-specific and difficult to treat.

We try to treat and get through episodes at home; syringing pedialyte into KK slowly and giving her medication (see below). Often the episode is intense enough to require a rehydration via IV (intravenous) at hospital.

It typically takes KK 10-14 days to fully recover from an episode and return to baseline (gross motor, fine motor, communication, eating and drinking).

Medications to treat an episode include: Tylenol, Zofran (ondansetron), PEG 3350 (polyethylene glycol), Gravol, gabapentin




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