Neurology · Comprehensive Seizure Record

Phoebe · Seizure Tracking Summary

Days 1–10 (04–13 Jun 2026) · FCD type IIb confirmed; now home on Vigabatrin + Lacosamide with Phenytoin taper
Diagnosis
Focal cortical dysplasia (IIb)
Status
At home from 12 Jun
Patient
Phoebe
Date of birth
28 Oct 2018 (7y)
Weight
22.8 kg
Recording period
04–13 Jun 2026
Prepared by
 
◆ Diagnosis confirmed · 11 June
The second MRI (ketamine-assisted, 11 Jun 12:00) confirmed Focal Cortical Dysplasia (FCD) type IIb, with results delivered that night. This is a structural, focal malformation of the cortex and a recognised cause of focal epilepsy, consistent with the frontal-lobe focus seen on EEG and with Phoebe's drug-resistant seizure pattern.
EEG
Seizure activity localised to a frontal lobe region; typical event captured
Medications
Vigabatrin + Lacosamide ongoing; Phenytoin tapering to stop 21 Jun
Status
Came home 12 Jun 16:00; warning aura now felt before some seizures
133
Events, Days 1–10
74%
Awake / resting
25%
Sleep-related
43%
At the medication trough
3
Medications in play
Circadian pattern · every recorded event (Days 1–10)
Awake / resting Sleep-related Preceded by aura Shaded = medication trough windows
Each marker is one timestamped event. Phoebe came home on Day 9 at 16:00 (marked); events before then were in hospital. Shaded bands are the pre-dose periods when medication cover is weakest.
Key events timeline & day ranking
Tue 3 Jun16:00 · pre-admission
Investigation
First MRI
Result inconclusive; a repeat scan was planned.
Wed 4 JunDay 1
Admission
Admitted to hospital
Seizures tracked from this day; Levetiracetam started (first dose 15:00).
Wed 4 JunDay 1
Investigation
EEG monitoring
Video-EEG captured a typical event; localised to a frontal lobe region.
Sun 8 JunDay 5
Medication
Lacosamide started
145 mg IV loading dose.
Mon 9 JunDay 6
Medication
Phenytoin introduced
Added as a further medication (16:00).
Tue 10 JunDay 7
Medication
Levetiracetam stopped
Withdrawn after a taper.
Wed 11 Jun12:00 · Day 8
Investigation
Second MRI
Ketamine-assisted MRI performed.
Wed 11 Jun19:04 · Day 8
Medication
Perampanel started
Single 2 mg dose.
Wed 11 Junthat night · Day 8
Diagnosis
Diagnosis: FCD type IIb confirmed
MRI confirmed focal cortical dysplasia type IIb; results delivered that night.
Thu 12 JunDay 9
Medication
Perampanel stopped
Discontinued after the single dose; switched to Vigabatrin.
Thu 12 Jun09:25 · Day 9
Medication
Vigabatrin started
New anti-seizure medication added.
Thu 12 Jun16:00 · Day 9
Home
Came home
Discharged from hospital.
Day ranking
Calmest to hardest, by number of seizures
1Day 25 Jun10calmest
2Day 36 Jun11
3Day 58 Jun13
4Day 14 Jun14
5Day 47 Jun15
6Day 710 Jun15
7Day 811 Jun15
8Day 69 Jun17
9Day 912 Jun19hardest
·Day 1013 Jun4partial
Ranking covers complete days (1–9). Day 10 is a partial day so far and is shown separately, not ranked.
High-level chronology of Phoebe's admission, from the first MRI and first tracked seizures through investigations, medication changes, the confirmed diagnosis, and coming home. Dose-by-dose detail is in the medication journey; every seizure is in the full event log.
Seizure timing vs medication coverage
43%
Across all 10 days, 43% of seizures (57 of 133) fall in the final third of the dosing cycle — when medication has worn down to its weakest, just before the next dose. Only 30% happen in the first third just after a dose. The single biggest slice is the 10–12 hour pre-dose window at 26%. Seizures keep breaking through as the drug wears off.
Seizures by time since last dose
Based on the twice-daily schedule that applied through most of the record (mornings ~09:00, evenings ~21:00).
Coverage at a glance
43%
in the weakest-cover third (8–12h post-dose)
30%
in the strongest-cover third (0–4h post-dose)
Doses have now moved earlier (Phenytoin 07:00/19:00; Vigabatrin + Lacosamide 08:00/20:00), so the trough windows shift roughly 1–2 hours earlier going forward. Worth watching whether the early cluster moves with the new timing.
The two trough windows · when cover is lowest
Pre-dose trough hours (06–09 & 18–21) Other hours
The two pre-dose windows cover 25% of the clock but hold 38% of seizures. Morning trough 06–09: 23% of events, on all 10 days. Evening trough 18–21: 15% of events, on 9 of 10 days.
Current medication schedule
MedicationMorningEvening
Fenitoína · Phenytoin (tapering)07:00
per taper below
19:00
per taper below
Vigabatrina · Vigabatrin08:00
250 mg (½ tablet)
20:00
250 mg (½ tablet)
Lacosamida · Lacosamide08:00
75 mg
20:00
100 mg (½ tablet)
Timing updated today: Phenytoin moved to 07:00 / 19:00 and the other medications to 08:00 / 20:00 (the printed prescription had Vigabatrin and Lacosamide at 09:00 / 21:00). Vigabatrin: 1 tablet = 500 mg, so 250 mg is half a tablet. Lacosamide: 1 tablet = 200 mg. Phenytoin syrup is 30 mg / 5 ml.
Phenytoin taper (desmame) to 21 June
DatesMorning doseEvening dose
11–12 Jun60 mg (10 ml)40 mg (6.6 ml)
13–14 Jun40 mg (6.6 ml)40 mg (6.6 ml)
15–16 Jun40 mg (6.6 ml)20 mg (3.3 ml)
17–18 Jun20 mg (3.3 ml)20 mg (3.3 ml)
19–20 Jun20 mg (3.3 ml)
21 Junstopstop
From the prescription. Phenytoin syrup 30 mg / 5 ml; doses now given at 07:00 and 19:00. Stops after 20 June.
Medication journey & key events
04 Jun 15:00Levetiracetam 3.2 mL
First dose
05 Jun 00:00Levetiracetam 3.2 mL
Second dose
05 Jun 11:00Levetiracetam 5 mL
Dose increased
05 Jun 23:04Levetiracetam 5 mL
Evening dose; seizure occurred when woken
06 Jun 10:25Levetiracetam 5 mL
Morning dose
06 Jun 21:21Levetiracetam 5 mL
Evening dose; seizure occurred when woken
08 Jun 09:20Levetiracetam 5 mL
Morning dose
08 Jun 18:33Lacosamide 145 mg
Loading dose started; infused over 30 minutes
08 Jun 19:03Lacosamide 145 mg
Loading dose completed
08 Jun 20:00Vomiting
Vomited after loading dose
08 Jun 21:23Levetiracetam Taper dose
Original medication as part of 36-hour taper
09 Jun 01:00Phenytoin Dose 2
Second dose reported between Day 6 and Day 7
09 Jun 08:49Lacosamide 75 mg
First maintenance dose after plan correction
09 Jun 16:00Side effect
After phenytoin: dizzy, unstable, unusually loud
09 Jun 16:00Phenytoin Started
Third medication introduced; later identified as Fenitoina / Phenytoin
09 Jun 21:00Levetiracetam Taper dose
Woken for meds; short seizure occurred
09 Jun 21:40Lacosamide IV dose
Behavioural/euphoric event around this time
10 Jun 07:41Levetiracetam 1.7 mL
Taper dose
10 Jun 09:30Lacosamide 75 mg
Maintenance dose
10 Jun 09:32Levetiracetam 1.7 mL
Duplicate dose given in error
10 Jun 12:52Observation
Phoebe reported she was no longer dizzy
10 Jun 19:09Levetiracetam Final taper dose
Final dose before stopping
11 Jun 00:06Phenytoin 60 mg
Maintenance dose; schedule being phased earlier by ~1h per dose
11 Jun 09:40Lacosamide 75 mg
Maintenance dose
11 Jun 12:00Ketamine-induced MRI
Second MRI performed after 12:04 brief seizure
11 Jun 19:04Perampanel (single dose, discontinued)
Given once (2 mg); not continued - switched to Vigabatrin after MRI result
11 Jun 22:00MRI result: FCD type IIb
Results delivered that night; focal cortical dysplasia type IIb confirmed
12 Jun 09:25Vigabatrin
New anti-seizure medication started
12 Jun 16:00Came home
Discharged from hospital
12 Jun 20:49Evening anti-seizure medications
Evening meds given 2 min after 20:47 seizure
Full sequence of doses and key events across the admission. Levetiracetam was withdrawn by Day 7. The current picture is Vigabatrin + Lacosamide, with Phenytoin tapering. Perampanel was a single dose only and was discontinued.
New clinical developments
◆ Diagnosis confirmed · Focal Cortical Dysplasia (FCD) type IIb

The repeat MRI on 11 June at 12:00 (ketamine-assisted) identified the cause: focal cortical dysplasia type IIb, with results given to the family that night. FCD IIb is a focal malformation of the cortex and a well-recognised cause of focal, often drug-resistant epilepsy, which fits both the frontal-lobe EEG focus and the fact that seizures have continued through several medications. The implications for treatment, including whether epilepsy surgery is an option, are noted as priority questions for the team.

Warning aura identified (Day 7)

Phoebe has begun feeling seizures coming on: quietness and fan-like noise, then a spine tingle rising from her lower back before the laughter comes, once asking for hands on her head. Recorded on 3 events. A rising sensory aura with preserved awareness is clinically meaningful — it can help localise and classify her seizures, and gives her a few seconds of warning. On Day 8 she also began warning Dad as a seizure started.

Other signals
  • New medication. Vigabatrin added Day 9 alongside Lacosamide; Phenytoin now tapering; Levetiracetam stopped Day 7. (Perampanel was tried once on Day 8 and not continued.)
  • Right eye twitch. Now seen across Days 6–8 (became prominent Day 8); a consistent right-sided sign may carry localising value.
  • Awareness. Recorded as preserved in most daytime events (eating, talking, answering, stopping the giggling herself).
  • Came home. Discharged 12 Jun 16:00; the early-morning pattern continued at home on Day 10.
Median event duration by day
Events were briefest around Days 7–8 (~15 sec); Day 9 saw a mix of short sleep events and stronger daytime laughing (up to 35–40 sec).
Side effects & events to discuss with the team

Vomiting after the Lacosamide load; dizziness/unsteadiness/loudness after Phenytoin (resolved Day 7 12:52); a behavioural/euphoric episode around the Day 6 21:40 IV dose; a duplicate Levetiracetam dose given in error (Day 7); and on Day 9 stronger laughing with knee weakness (15:35) and small urinary leaks.

Frequency & pattern over time
Events per day · awake vs sleep
Day 9 (first full day spanning discharge) was the highest at 19. Day 10 is partial (to ~08:30 today).
Awake vs sleep-related (overall)
98 awake / resting
33 sleep-related
2 self-reported
Across all 133 recorded events.
The picture so far
Clinical observations
Observations as recorded by the family and care team. Presented for clinical interpretation; no diagnosis or treatment conclusion is implied beyond what clinicians have reported.
Before vs after Vigabatrin
Early
Vigabatrin was added on 12 June at 09:25 (Day 9). So far there is no clear change in seizure frequency — about 14.5/day before and 14.6/day after — but the post-Vigabatrin window is only about one day, far too short to judge, and Vigabatrin is usually titrated up over time. This section is a baseline to track from, not yet a verdict.
Seizures per day · before vs after
Rate, not raw counts, because the windows differ in length: 118 events over ~8.1 days before, 14 events over ~1.0 day after.
What we can say so far
  • Frequency. Essentially unchanged in the first day (14.5 vs 14.6 per day). Too early to read anything into this.
  • Duration. Median 21s before vs 25s after — broadly similar.
  • Pattern. Care team noted afternoon/evening intervals appeared to widen on Day 9; worth watching as the dose is built up.
  • To track. This page should be revisited after several days on a steady Vigabatrin dose for a fair before/after comparison.
Pre-Vigabatrin spans Day 1 to 12 Jun 09:25; post-Vigabatrin is everything after. Because the post window is so short and the dose is still being established, the comparison is a starting baseline only.
Seizure pattern · visualisation options to choose from
Four different ways to show the same data. Have a look and tell me which one (or more) you'd like to keep in the main report; I can drop the rest, resize, or combine.
Option A Daily seizure count with medication changes
The classic seizure-diary view: how many per day, with dashed lines marking each new medication. Easy to read trend and link it to treatment. (Day 10 is partial.)
Option C Day × hour heatmap
Each square is one hour of one day; darker = more seizures. Shows the daily load and the time-of-day clustering (mornings and evenings) together in one grid.
Option D 24-hour clock
A round-the-clock view of when seizures happen, pooled across all days. Each spoke is an hour; longer = more seizures. The coral spokes are the pre-dose trough windows (06–09 and 18–21), which clearly stand out as the busiest times.
Option E Seizure type mix by day
Each day's seizures split by character, from milder humming and giggling through to stronger laughing. Shows how the type of seizure shifts over time, not just how many.
Tell me your favourite(s) and I'll fold it into the main report and remove this options section.
Full event log · Days 1–10 (133 events)
TimePhase / stateDur.FeaturesNotes
Day 1 · Fri 05 Jun
00:57Typical After transfer to new ward
06:00Self-reported Self-reported before first witnessed event
06:47Awake30sHumming/talking Conscious, talking, asked brother to hold hand
07:36AwakeTypical Playing ball / keepie-uppies
08:17AwakeLaughing In car; could raise arms and repeat phrases
09:27Awake20sTypical Hospital waiting room; could pick up doll but mislocated it
10:13AwakeLaughing Outside with Dad talking about tests
11:28Awake20sFreeze/typical Balancing on tree roots; froze briefly
12:13AwakeTypical During EEG; typical event captured
13:34AwakeTypical After wee and poo
14:38AwakeMainly humming, few giggles Watching movie; no urinary leakage noted
19:15AwakeTypical Hospital bed; after first levetiracetam dose
21:35SleepTypical Falling asleep
23:25SleepHumming only Woke from sleep; reached for hand; speech incoherent
Day 2 · Fri 05 Jun
06:47AwakeLaughing Shorter; showing where mum was sleeping
08:36AwakeLaughter + humming Colouring with headphones
09:44Awake40sLaughter + humming Talking; vibrating sensation
11:09AwakeLaughter + humming Needed wee and got out of bed during seizure
12:45Awake25sLaughing + humming On Dad's lap; normal laughter transitioned into seizure laughter
14:39AwakeTypical
16:34AwakeLaughing After jogging back to playroom
18:30AwakeMore humming than giggles Eating dinner
20:39SleepMore humming than giggles Lying down trying to sleep
23:04SleepHumming Woken for medication; speech hard to understand
Day 3 · Sat 06 Jun
07:03Sleep10sHumming Very short after waking
08:55AwakeMainly humming Shorter, less aggressive
10:19AwakeLaughing watery eyesDuring blood pressure cuff
12:08Awake45sLaughing + humming
13:29Awake45sLaughing watery eyes
15:03Awake45sTypical Paused while looking into bag before seizure became obvious
17:14AwakeTypical
18:39Awake30sLaughing Gentler; no watery eyes; normal laughter changed into seizure laughter
19:59AwakeGiggling/laughter watery eyesGetting into bed
21:21SleepHumming Woken for medication; eyes open; speech difficult; back to sleep
21:38Sleep10sHumming Sat up, sleep talking, eyes open; back to sleep
Day 4 · Sun 07 Jun
06:32Sleep10sHumming Woke from sleep; incoherent speech
07:15Sleep10sVery short Asleep, woke briefly, went back to sleep
07:50AwakeShort
08:50AwakeHumming + little giggle Breakfast
10:20AwakeTypical After shower; intense itching beforehand
11:30Awake36sLaughing watery eyesVideo captured
13:20AwakeGiggles -> watery eyes -> humming watery eyesPlaying with new friend in playroom
14:35AwakeLaughing Continued eating cheese string
16:00Awake40sLaughing leakageBed change
17:17Awake40sLaughing
18:27Awake30sLaughing Answered time question quickly
19:43AwakeVery brief/self-reported Dad briefly out; almost forgot to mention it
21:01SleepGiggling -> humming leakageLying in bed, not asleep
21:52SleepHumming -> jibberish speech Back to sleep
22:59Sleep10sHumming Very short, back to sleep
Day 5 · Mon 08 Jun
01:11Sleep10sHumming Very short
02:44Sleep10sHumming Eyes stayed closed
05:19Sleep10sHumming Quick humming
07:22Awake40sLaughing watery eyes
09:14AwakeLaughing Stood up
10:45Awake38sLaughing watery eyesWatching tablet
12:24Awake45sLaughing leakagePlaying tablet in activity room
13:48Awake40sLaughing leakageFace looked strained/pained but no pain
15:01Awake45sLaughing leakageLying on bed getting massage
15:58Awake35sLaughing leakageTalking about party bags
17:13Awake40sLaughing leakage
18:01AwakeLaughing leakage5-10 min after cannula distress while calming; weaker-legged afterwards
23:20Post-Lac10sHumming First recorded event after lacosamide loading dose
Day 6 · Tue 09 Jun
01:46Post-Lac10sHumming + brief speech In sleep
03:08Post-Lac10sHumming In sleep
03:16Post-Lac10sHumming In sleep
04:37Post-Lac15sHumming + few giggles Slightly longer
06:32Post-Lac15sHumming + few giggles Similar to 04:37
07:08Post-Lac45sGiggling eye twitchSat up in bed; right eye twitch observed
08:59Post-Lac45sGiggling leakageSitting on bed; shortly after lacosamide maintenance dose
10:15Post-Lac45sGiggling leakageAfter snack, sitting in bed
12:10Post-Lac45sGiggling On bed
13:30Post-Lac20sProper/real laughing
15:15Post-Lac20sProper laughing
16:00Lac+PhenDuring new medication process Phenytoin introduced
17:24Lac+Phen10sVery small, brief giggling
19:28Lac+Phen10sVery small, brief giggling
20:09Lac+PhenShort giggles
21:00Lac+PhenShort Woken for medication
21:40Lac+PhenPossible seizure / behavioural event Woke incomprehensible, smiley/euphoric, drunk/high; lacosamide IV dose at this time
Day 7 · Wed 10 Jun
07:37Lac+PhenAura / seizure auraQuietness, fan noise, spine tingle, looked left, touching ear
08:12Lac+PhenSeizure Details pending
08:59Lac+PhenVery mild / genuine laughter Video; looked like genuine laughter
09:30Lac+PhenTypical gelastic / false laughter Returned to fake/false laughing
10:09Lac+PhenSeizure with aura auraAsked for hands on head; spine tingle travels up before noise comes out
13:10Lac+Phen8sGenuine laughter / very mild auraAlmost missed; under 10 sec; spine tingle confirmed
14:02Lac+Phen15sProper giggle Gentle/proper giggle
15:05Lac+Phen8sVery light giggle Less than 10 sec; slightly embarrassed afterwards
15:45Lac+Phen20sProper laughing Commented on smell of toy; hard to distinguish from normal laughter
16:25Lac+PhenGentle laughing + eye twitch eye twitchDefinitely seizure; she thought lighter; eye twitch observed
16:55Lac+PhenVery mild giggling leakageAlmost not noticed; small leak; said she tried to control the giggles
18:02Lac+PhenMild seizure In line with lighter Day 7 events
19:26Lac+PhenWeird/characteristic laughter 17 min after final levetiracetam dose; wife noted original pattern/duration
20:05Lac+PhenWeird/characteristic laughter leakageAfter shower; urinary leak
20:38Lac+PhenWeird/characteristic laughter Lying in bed trying to sleep
Day 8 · Thu 11 Jun
07:30Lac+Phen25sWeird giggling Woken up; first observed seizure after seizure-free night
08:05Lac+Phen15sWeird giggle eye twitchRight eye twitch
08:37Lac+Phen15sWeird giggle Same as previous
09:23Lac+Phen25sWeird giggle Same pattern as previous
10:10Lac+Phen20sSeizure Occurred 30 min after 09:40 lacosamide
11:36Lac+Phen30sHumming then laughter / crescendo eye twitch4-5 hums then laughter; eye twitching more prominent; less aggressive than earlier days
12:04Lac+PhenShort giggling fit Brief giggling fit before ketamine-induced second MRI
14:32Lac+Phen25sMild crescendo Said at the end she stopped the giggling herself
15:09Lac+Phen20sSame Day 8 pattern eye twitchEye twitching; similar to other Day 8 events
16:11Lac+Phen20sWarning then pause then giggling eye twitchShe warned Dad as it started; pause; then giggling; eye twitching
16:43Lac+PhenShort seizure Short one again
17:21Lac+PhenEye twitching seizure eye twitchDad not present; family friend observed; slightly longer than before but no benchmark for friend
18:11Lac+Phen23sProper laughing Proper laughing; 20-25 sec
18:27Lac+Phen23sProper laughing Proper laughing; 20-25 sec
19:31Lac+Phen23sProper laughing Proper laughing; 20-25 sec; after first Perampanel dose
Day 9 · Fri 12 Jun  ·  came home 16:00
03:40Lac+PhenVery quick hum Very quick one, just hum
03:54Lac+PhenHum + one giggle Opened eyes
05:05Lac+PhenHum/giggle sleep event Same pattern; unsure if eyes opened
06:25Lac+PhenHum/giggle sleep event Same pattern
06:45Lac+PhenHum then giggle Opened eyes, back to sleep
07:40Lac+PhenSeizure Details not recorded
08:05Lac+PhenSeizure From bedside tracker
08:34Lac+PhenSeizure From bedside tracker
09:30+VigabatrinSeizure After Vigabatrin started at 09:25
10:05+VigabatrinSeizure From bedside tracker
10:45+VigabatrinSeizure From bedside tracker
11:15+Vigabatrin38sLong laughter / not controlled leakage35-40 seconds; long laughter; small wee
12:04+VigabatrinSeizure Additional seizure later confirmed
12:55+Vigabatrin25sStrong laughing More aggressive, between best and worst phenotype
15:35+Vigabatrin30sFull-on laughing Red-faced; knees gave a little; had to sit on Dad's knee; bashful asking nurse to remove cannula
16:05+VigabatrinVery mild Excitement about leaving
18:35+VigabatrinSeizure Details pending
19:45+VigabatrinProper laughing leakageProper laughing; urinary leakage
20:47+Vigabatrin25sFirm giggling 25 seconds; evening meds at 20:49
Day 10 · Sat 13 Jun
06:29+Vigabatrin20sBrief laughing Woke up briefly, then back to sleep
07:39:00+Vigabatrin20sBrief laughing seizure as she transitioned out of sleep
08:30:00+Vigabatrin10sBrief laughing Whilst watching dinner
13:55+Vigabatrin25sMore intense; reduced engagement leakageMore intense during; could not engage/talk during, unlike before when she could mechanically talk after the first ~5 seconds. Big wee (large leakage).
Rows shaded gold fall in a medication trough window (06–09 or 18–21). Days 1–6 are reconstructed from earlier records; Days 8–10 include photo and bedside-tracker corrections.
Home-recorded observational data, compiled 13 June 2026 for clinical review.
133 events through Day 10. Medication regimen changed repeatedly across the record; trough analysis uses the typical twice-daily schedule. Figures shown as recorded.