Kaleb’s Log (Updated 7/21/14)

DATE	TIME	MEDS	EVENT	DETAILS
Past	n/a	n/a	Observations	Shakes head often, shallow cough week prior
09/02/12	8pm	n/a	Head Drops	4-5 drops, dad wondered if ok
09/03/12	7pm	n/a	Head Drops	2-4 drops, stopped after burp
09/04/12	9pm	n/a	Head Drops	2-3 drops, stopped after burp, felt like just gas/reflux but 3 days in a row around same time seems weird, mom suspected IS after Googling
09/05/12	8am	n/a	Called Ped Neuro	Made same day 11:30am appt
09/05/12	12pm	n/a	IS Seizure	1st episode as we were leaving appt, ~10min, myoclonic seizures
09/05/12	12:30pm	n/a	Admitted to Hospital	Room 169
09/05/12	3pm	n/a	EEG	Modified Hypsarrhythmia. Nursing, no sleeping
09/05/12	8:20pm	n/a	IS Seizure	12min, spasms up to 20s apart
09/06/12	4am	n/a	Stopped Nursing	Need empty stomach for anesthesia
09/06/12	7:15am	n/a	IS Seizure	7min, spasms 12-20s apart
09/06/12	8am	n/a	MRI	Periventricular injury, PVL or infection
09/06/12	4:25pm	n/a	IS Seizure	7min
09/06/12	6pm	KlonoPIN (Clonazepam)	0.125mg	Started
09/07/12	3:05am	n/a	IS Seizure	Muted, 3min
09/07/12	8am	n/a	EEG	Awake, nursing, seizure, sleeping. Still hyps.
09/07/12	8:40am	n/a	IS Seizure	5min, each spasm 10s apart
09/07/12	4:20pm	n/a	IS Seizure	6min
09/07/12	6pm	KlonoPIN (Clonazepam)	0.125mg	Stopped
09/07/12	6pm	Clobazam Orapred (Prednisone) Septra Zantac	1.25mg 2x/day 19.5mg 2x/day 2ml daily 12mg(0.67ml) 2x/day	Started
09/07/12	9pm	n/a	Development	STTN 8hrs
09/08/12	5:10am	n/a	IS Seizure	Last one, muted, shorter 3min, 10 spasms total
09/08/12	9am	Prednisone	Side Effect	Increased Appetite
09/09/12	11am	ClobazamOrapred (Prednisone)	1.25mg 2x/day 19.5mg 2x/day	Stopped
09/10/12	11:25am	ACTH	20 units (0.25ml) daily	First dose, right thigh IM, no crying
09/10/12	6pm	n/a	Hospital Discharge	No huge side effects, doing well, stable. Home sweet home!
09/11/12	11am	ACTH	Side Effect	Diarrhea
09/12/12	11am	ACTH	Side Effect	Holding Breath, Rolling Eyes, Sleeping with Eyes Half Open (Smiles), Hyperactive, Lack of Sleepy Stage (just awake suddenly or sleeping suddenly)
09/13/12	11am	n/a	Development	Not interested in toys, does assisted sitting/standing/sit-ups, lost rolling over skill, can’t prop up during tummy time, weak left arms/hands
09/15/12	11am	n/a	Development	Myclonic jerks in sleep, clasps hands together (too much? while breath-holding), doesn’t cry for right thigh shots but always for left, eye rolled once during tummy time
09/16/12	11am	n/a	Development	Stares downward when sitting or standing up and doesn’t respond immediately, startle in sleep twice, bats at toys now, propping self up more
09/16/12	11am	ACTH	Side Effect	Pooping less (1/day)
09/16/12	9pm	ACTH	Side Effect	Stopped STTN
09/17/12	11am	n/a	Development	Props self up well, intentionally reaches for toy, rolling over again!
09/18/12	11am	n/a	Development	Roll over in both directions from tummy to back, stares at left hand as if foreign
09/19/12	3pm	n/a	Suspicious Activity	Repeated Lip Smacking with Head Down
09/20/12	9am	n/a	EEG	Improved but still hypsarrhythmic
09/22/12	?pm	n/a	Side Effects?	Gurgling, less eye rolls last few days
09/22/12	8pm	n/a	Development	Feeling texture of blanket, grab toys well with right hand, sitting with support holding left (weak) hand
09/23/12	3:50pm	n/a	(Very) Suspicious Activity	Rapid clusters of head nodding for 4-5min, then yawned but was already due for nap, also more eye rolls while nursing today, LOL out of nowhere followed by one cluster of nods
09/24/12	10:50am	n/a	IS Seizure	2 spasms, possibly 3, last one muted
09/24/12	1pm	ACTH	30 units (0.38ml) daily	Second 0.13ml shot for 0.38ml total starting today
09/25/12	8am	ACTH	Side Effect	Loud Lip Smacking, Ravenous, Minor Fussiness, Not Sleeping Well, Elevated Blood Pressure, Loss of Muscle Tone/Skills Again
09/26/12	3pm	ACTH	40 units (0.5ml) daily	Only 0.05ml left at 11am, second 0.45ml shot for 0.5ml total
09/26/12	5pm	ACTH	Side Effect?	Repeatedly smacking mouth with right hand
09/27/12	1pm	ACTH	Side Effect?	Repeatedly kicking right foot
09/29/12	8pm	Twinlab Multivitamin	1 ml	Started
09/30/12	4:30pm	n/a	Suspicious Activity	Shook all limbs nonstop for several seconds upon a startling wake
10/02/12	8:30am	n/a	EEG	Slightly improved but still hypsarrhythmic
10/02/12	8:30pm	ACTH	60 units (0.75ml) daily	Gave 0.25ml for total of 0.75ml, start 2 x 30 units tomorrow
10/02/12	11:30pm	ACTH	Side Effect	Blood in stool (didn’t get results until 10/5), always poop right after dose increase (usually poops every week or two before all this)
10/03/12	8am	n/a	IS Seizures	3 head drops, sudden, longer period of time between each
10/03/12	1pm	ACTH wean	30 units (0.38ml) daily	Wean started today, 30 units for 3 days
10/03/12	all day	n/a	IS Seizure	Several individual spasms while falling asleep, during sleep and it wakes him up
10/04/12	all day	n/a	Suspicious Activity	Several individual spasms during sleep but doesn’t wake him up, no IS while awake
10/04/12	10:30am	n/a	Eye Checkup	Saw pediatric ophthalmologist for baseline prior to starting VGB
10/05/12	8pm	Zantac	1.7 ml twice daily	Increased dose due to blood in stool
10/05/12	12:30pm	Vigabatrin	250 mg twice daily	Started Sabril/VGB
10/06/12	11:30am	ACTH wean	20 units (0.25ml) daily	Another 10 units drop down to 20 units for 3 days
10/06/12	all day	ACTH wean/ Vigabatrin	Side Effect	Cranky, wants to nurse nonstop, sleepy, fussy (since last night)
10/07/12	all day	ACTH wean/ Vigabatrin	Side Effect	Angry, screaming/yelling, sleepy (except at night)
10/08/12	4:30pm	n/a	IS Seizure	Head spasms while nursing, followed by 2 head drops while held up
10/08/12	7pm	Vigabatrin	250mg AM 500mg PM	Increased dosage by 1.5x, started 500mg tonight
10/09/12	4am	n/a	IS Seizure	3 head drops
10/09/12	1pm	ACTH wean	10 units (0.13ml) daily	Another 10 units drop down to 10 units for 3 days
10/09/12	3:30pm	n/a	IS Seizure	2 head drops during tummy time
10/11/12	12pm	n/a	Development	Stronger left hand since weaning, regained some leg strength, smiled again first time today
10/12/12	1pm	ACTH wean	10 units (0.13ml) every other day	No shot today, then 10 units every other day for 3 more doses
10/13/12	9:30am	n/a	IS Seizure	1 spasm, 1 head drop
10/13/12	10am	Vigabatrin	500mg AM 500mg PM	Increased dosage, started 500mg this morning
10/17/12	12pm	ACTH	10ml	Stopped; Last Shot
10/18/12	7pm	n/a	Side Effect	First bowel movement since bloody stool
10/20/12	n/a	n/a	Milestone	First tooth: bottom front right
10/21/12	8pm	Zantac	1.7ml twice daily	Stopped b/c stool tested normal & no longer on ACTH
10/23/12	9am	n/a	EEG	1st NORMAL EEG! =)
10/27/12	n/a	n/a	Milestone	Second tooth: bottom front left
10/29/12	9am	n/a	IS Seizure	2 spasms
11/18/12	8am	n/a	Development	Difficulty rolling over/regression seems to have started
11/20/12	9am	n/a	Suspicious Activity	Weird activity for 3 days now, difficulty holding head up yesterday, shook/bang head today with eyes rolled back (wide awake before and after)
11/24/12	11am	n/a	IS Seizure	At least 2 head drops, had some probably day before too and some after
11/24/12	7pm	Vigabatrin	1500 mg daily	Increased Sabril/VGB by 250mg/day, takes few days to take effect
11/25/12	10:30am	n/a	IS Seizure	1 spasm, 2 head drops, then another head drop at 7:30pm
11/25/12	8:30pm	n/a	Suspicious Activity	While sleeping, shook/waved arms and kicked legs while crying, then went back to sleep. Did this on a Thanksgiving night and once before that too. While awake, close eyes and rubs eyes and face and shakes head all around as if frustrated. Did this yesterday and several days ago too.
11/27/12	4:30pm	n/a	24hr EEG	Started
11/28/12	5:30pm	n/a	24hr EEG	Ended. Normal!
12/23/12	7:30pm	n/a	Development or Suspicious Activity?	Started crossing right index and middle fingers.
12/26/12	8:30pm	n/a	Suspicious Activity	Possible head drops, multiple in a row. Started out happening only on tummy time, now sitting up as of 12/28 too. Recorded, contact neurologist, waiting for callback.
12/29/12	5pm	n/a	EEG	Normal! =)
05/29/13	9am	n/a	Roseola	Fever Begins, Rash Follows 6/1 AM
06/06/13	11am	n/a	Vaccine	1st Hepatitis A Vaccination
06/06/13	11pm	n/a	Seizure	Focal seizures, everything jerking to left (esp head), eyes rolled, 2 minutes
06/11/13	8:30am	Tylenol	Fever	101.9
06/11/13	11:30am	n/a	EEG	Normal!! At least hypsarrhythmia did not come back!
06/11/13	4:30pm	Tylenol	Fever	103.5
06/11/13	9pm	Tylenol	Fever	103.7
06/20/13	6pm	Sabril wean	500mg at night	Drop 1 packet at night for 1 week
07/19/13	N/A	Development	N/A	First word: Mama!
07/20/13	6pm	Sabril wean	250mg at night	Last Dose
07/23/13	N/A	Development	N/A	Stopped saying mama.
09/12/13	N/A	Development	N/A	Talking again: Mama!
02/10/14	8pm	Development	N/A	Walking: first independent steps!
06/07/14	1pm	Development	N/A	1 Year SEIZURE-FREE!
07/21/14	6pm	Development	N/A	1 Year MEDICATION-FREE!