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! |
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