Kaleb’s Log (Updated 7/21/14)

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
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
0.125mg Stopped
09/07/12 6pm Clobazam Orapred
2ml daily
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
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/
Side Effect Cranky, wants to nurse nonstop, sleepy, fussy (since last night)
10/07/12 all day ACTH wean/
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!

One thought on “Kaleb’s Log (Updated 7/21/14)

  1. Pingback: Hacking Health | tuna says

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.