| Dates | Morning dose | Evening dose |
|---|---|---|
| 11–12 Jun | 60 mg (10 ml) | 40 mg (6.6 ml) |
| 13–14 Jun | 40 mg (6.6 ml) | 40 mg (6.6 ml) |
| 15–16 Jun | 40 mg (6.6 ml) | 20 mg (3.3 ml) |
| 17–18 Jun | 20 mg (3.3 ml) | 20 mg (3.3 ml) |
| 19–20 Jun | — | 20 mg (3.3 ml) |
| 21 Jun | stop | stop |
| 04 Jun 15:00 | Levetiracetam 3.2 mL First dose |
| 05 Jun 00:00 | Levetiracetam 3.2 mL Second dose |
| 05 Jun 11:00 | Levetiracetam 5 mL Dose increased |
| 05 Jun 23:04 | Levetiracetam 5 mL Evening dose; seizure occurred when woken |
| 06 Jun 10:25 | Levetiracetam 5 mL Morning dose |
| 06 Jun 21:21 | Levetiracetam 5 mL Evening dose; seizure occurred when woken |
| 08 Jun 09:20 | Levetiracetam 5 mL Morning dose |
| 08 Jun 18:33 | Lacosamide 145 mg Loading dose started; infused over 30 minutes |
| 08 Jun 19:03 | Lacosamide 145 mg Loading dose completed |
| 08 Jun 20:00 | Vomiting Vomited after loading dose |
| 08 Jun 21:23 | Levetiracetam Taper dose Original medication as part of 36-hour taper |
| 09 Jun 01:00 | Phenytoin Dose 2 Second dose reported between Day 6 and Day 7 |
| 09 Jun 08:49 | Lacosamide 75 mg First maintenance dose after plan correction |
| 09 Jun 16:00 | Side effect After phenytoin: dizzy, unstable, unusually loud |
| 09 Jun 16:00 | Phenytoin Started Third medication introduced; later identified as Fenitoina / Phenytoin |
| 09 Jun 21:00 | Levetiracetam Taper dose Woken for meds; short seizure occurred |
| 09 Jun 21:40 | Lacosamide IV dose Behavioural/euphoric event around this time |
| 10 Jun 07:41 | Levetiracetam 1.7 mL Taper dose |
| 10 Jun 09:30 | Lacosamide 75 mg Maintenance dose |
| 10 Jun 09:32 | Levetiracetam 1.7 mL Duplicate dose given in error |
| 10 Jun 12:52 | Observation Phoebe reported she was no longer dizzy |
| 10 Jun 19:09 | Levetiracetam Final taper dose Final dose before stopping |
| 11 Jun 00:06 | Phenytoin 60 mg Maintenance dose; schedule being phased earlier by ~1h per dose |
| 11 Jun 09:40 | Lacosamide 75 mg Maintenance dose |
| 11 Jun 12:00 | Ketamine-induced MRI Second MRI performed after 12:04 brief seizure |
| 11 Jun 19:04 | Perampanel (single dose, discontinued) Given once (2 mg); not continued - switched to Vigabatrin after MRI result |
| 11 Jun 22:00 | MRI result: FCD type IIb Results delivered that night; focal cortical dysplasia type IIb confirmed |
| 12 Jun 09:25 | Vigabatrin New anti-seizure medication started |
| 12 Jun 16:00 | Came home Discharged from hospital |
| 12 Jun 20:49 | Evening anti-seizure medications Evening meds given 2 min after 20:47 seizure |
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.
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.
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.
| Time | Phase / state | Dur. | Features | Notes |
|---|---|---|---|---|
| Day 1 · Fri 05 Jun | ||||
| 00:57 | — | Typical | After transfer to new ward | |
| 06:00 | — | Self-reported | Self-reported before first witnessed event | |
| 06:47 | Awake | 30s | Humming/talking | Conscious, talking, asked brother to hold hand |
| 07:36 | Awake | Typical | Playing ball / keepie-uppies | |
| 08:17 | Awake | Laughing | In car; could raise arms and repeat phrases | |
| 09:27 | Awake | 20s | Typical | Hospital waiting room; could pick up doll but mislocated it |
| 10:13 | Awake | Laughing | Outside with Dad talking about tests | |
| 11:28 | Awake | 20s | Freeze/typical | Balancing on tree roots; froze briefly |
| 12:13 | Awake | Typical | During EEG; typical event captured | |
| 13:34 | Awake | Typical | After wee and poo | |
| 14:38 | Awake | Mainly humming, few giggles | Watching movie; no urinary leakage noted | |
| 19:15 | Awake | Typical | Hospital bed; after first levetiracetam dose | |
| 21:35 | Sleep | Typical | Falling asleep | |
| 23:25 | Sleep | Humming only | Woke from sleep; reached for hand; speech incoherent | |
| Day 2 · Fri 05 Jun | ||||
| 06:47 | Awake | Laughing | Shorter; showing where mum was sleeping | |
| 08:36 | Awake | Laughter + humming | Colouring with headphones | |
| 09:44 | Awake | 40s | Laughter + humming | Talking; vibrating sensation |
| 11:09 | Awake | Laughter + humming | Needed wee and got out of bed during seizure | |
| 12:45 | Awake | 25s | Laughing + humming | On Dad's lap; normal laughter transitioned into seizure laughter |
| 14:39 | Awake | Typical | ||
| 16:34 | Awake | Laughing | After jogging back to playroom | |
| 18:30 | Awake | More humming than giggles | Eating dinner | |
| 20:39 | Sleep | More humming than giggles | Lying down trying to sleep | |
| 23:04 | Sleep | Humming | Woken for medication; speech hard to understand | |
| Day 3 · Sat 06 Jun | ||||
| 07:03 | Sleep | 10s | Humming | Very short after waking |
| 08:55 | Awake | Mainly humming | Shorter, less aggressive | |
| 10:19 | Awake | Laughing watery eyes | During blood pressure cuff | |
| 12:08 | Awake | 45s | Laughing + humming | |
| 13:29 | Awake | 45s | Laughing watery eyes | |
| 15:03 | Awake | 45s | Typical | Paused while looking into bag before seizure became obvious |
| 17:14 | Awake | Typical | ||
| 18:39 | Awake | 30s | Laughing | Gentler; no watery eyes; normal laughter changed into seizure laughter |
| 19:59 | Awake | Giggling/laughter watery eyes | Getting into bed | |
| 21:21 | Sleep | Humming | Woken for medication; eyes open; speech difficult; back to sleep | |
| 21:38 | Sleep | 10s | Humming | Sat up, sleep talking, eyes open; back to sleep |
| Day 4 · Sun 07 Jun | ||||
| 06:32 | Sleep | 10s | Humming | Woke from sleep; incoherent speech |
| 07:15 | Sleep | 10s | Very short | Asleep, woke briefly, went back to sleep |
| 07:50 | Awake | Short | ||
| 08:50 | Awake | Humming + little giggle | Breakfast | |
| 10:20 | Awake | Typical | After shower; intense itching beforehand | |
| 11:30 | Awake | 36s | Laughing watery eyes | Video captured |
| 13:20 | Awake | Giggles -> watery eyes -> humming watery eyes | Playing with new friend in playroom | |
| 14:35 | Awake | Laughing | Continued eating cheese string | |
| 16:00 | Awake | 40s | Laughing leakage | Bed change |
| 17:17 | Awake | 40s | Laughing | |
| 18:27 | Awake | 30s | Laughing | Answered time question quickly |
| 19:43 | Awake | Very brief/self-reported | Dad briefly out; almost forgot to mention it | |
| 21:01 | Sleep | Giggling -> humming leakage | Lying in bed, not asleep | |
| 21:52 | Sleep | Humming -> jibberish speech | Back to sleep | |
| 22:59 | Sleep | 10s | Humming | Very short, back to sleep |
| Day 5 · Mon 08 Jun | ||||
| 01:11 | Sleep | 10s | Humming | Very short |
| 02:44 | Sleep | 10s | Humming | Eyes stayed closed |
| 05:19 | Sleep | 10s | Humming | Quick humming |
| 07:22 | Awake | 40s | Laughing watery eyes | |
| 09:14 | Awake | Laughing | Stood up | |
| 10:45 | Awake | 38s | Laughing watery eyes | Watching tablet |
| 12:24 | Awake | 45s | Laughing leakage | Playing tablet in activity room |
| 13:48 | Awake | 40s | Laughing leakage | Face looked strained/pained but no pain |
| 15:01 | Awake | 45s | Laughing leakage | Lying on bed getting massage |
| 15:58 | Awake | 35s | Laughing leakage | Talking about party bags |
| 17:13 | Awake | 40s | Laughing leakage | |
| 18:01 | Awake | Laughing leakage | 5-10 min after cannula distress while calming; weaker-legged afterwards | |
| 23:20 | Post-Lac | 10s | Humming | First recorded event after lacosamide loading dose |
| Day 6 · Tue 09 Jun | ||||
| 01:46 | Post-Lac | 10s | Humming + brief speech | In sleep |
| 03:08 | Post-Lac | 10s | Humming | In sleep |
| 03:16 | Post-Lac | 10s | Humming | In sleep |
| 04:37 | Post-Lac | 15s | Humming + few giggles | Slightly longer |
| 06:32 | Post-Lac | 15s | Humming + few giggles | Similar to 04:37 |
| 07:08 | Post-Lac | 45s | Giggling eye twitch | Sat up in bed; right eye twitch observed |
| 08:59 | Post-Lac | 45s | Giggling leakage | Sitting on bed; shortly after lacosamide maintenance dose |
| 10:15 | Post-Lac | 45s | Giggling leakage | After snack, sitting in bed |
| 12:10 | Post-Lac | 45s | Giggling | On bed |
| 13:30 | Post-Lac | 20s | Proper/real laughing | |
| 15:15 | Post-Lac | 20s | Proper laughing | |
| 16:00 | Lac+Phen | During new medication process | Phenytoin introduced | |
| 17:24 | Lac+Phen | 10s | Very small, brief giggling | |
| 19:28 | Lac+Phen | 10s | Very small, brief giggling | |
| 20:09 | Lac+Phen | Short giggles | ||
| 21:00 | Lac+Phen | Short | Woken for medication | |
| 21:40 | Lac+Phen | Possible seizure / behavioural event | Woke incomprehensible, smiley/euphoric, drunk/high; lacosamide IV dose at this time | |
| Day 7 · Wed 10 Jun | ||||
| 07:37 | Lac+Phen | Aura / seizure aura | Quietness, fan noise, spine tingle, looked left, touching ear | |
| 08:12 | Lac+Phen | Seizure | Details pending | |
| 08:59 | Lac+Phen | Very mild / genuine laughter | Video; looked like genuine laughter | |
| 09:30 | Lac+Phen | Typical gelastic / false laughter | Returned to fake/false laughing | |
| 10:09 | Lac+Phen | Seizure with aura aura | Asked for hands on head; spine tingle travels up before noise comes out | |
| 13:10 | Lac+Phen | 8s | Genuine laughter / very mild aura | Almost missed; under 10 sec; spine tingle confirmed |
| 14:02 | Lac+Phen | 15s | Proper giggle | Gentle/proper giggle |
| 15:05 | Lac+Phen | 8s | Very light giggle | Less than 10 sec; slightly embarrassed afterwards |
| 15:45 | Lac+Phen | 20s | Proper laughing | Commented on smell of toy; hard to distinguish from normal laughter |
| 16:25 | Lac+Phen | Gentle laughing + eye twitch eye twitch | Definitely seizure; she thought lighter; eye twitch observed | |
| 16:55 | Lac+Phen | Very mild giggling leakage | Almost not noticed; small leak; said she tried to control the giggles | |
| 18:02 | Lac+Phen | Mild seizure | In line with lighter Day 7 events | |
| 19:26 | Lac+Phen | Weird/characteristic laughter | 17 min after final levetiracetam dose; wife noted original pattern/duration | |
| 20:05 | Lac+Phen | Weird/characteristic laughter leakage | After shower; urinary leak | |
| 20:38 | Lac+Phen | Weird/characteristic laughter | Lying in bed trying to sleep | |
| Day 8 · Thu 11 Jun | ||||
| 07:30 | Lac+Phen | 25s | Weird giggling | Woken up; first observed seizure after seizure-free night |
| 08:05 | Lac+Phen | 15s | Weird giggle eye twitch | Right eye twitch |
| 08:37 | Lac+Phen | 15s | Weird giggle | Same as previous |
| 09:23 | Lac+Phen | 25s | Weird giggle | Same pattern as previous |
| 10:10 | Lac+Phen | 20s | Seizure | Occurred 30 min after 09:40 lacosamide |
| 11:36 | Lac+Phen | 30s | Humming then laughter / crescendo eye twitch | 4-5 hums then laughter; eye twitching more prominent; less aggressive than earlier days |
| 12:04 | Lac+Phen | Short giggling fit | Brief giggling fit before ketamine-induced second MRI | |
| 14:32 | Lac+Phen | 25s | Mild crescendo | Said at the end she stopped the giggling herself |
| 15:09 | Lac+Phen | 20s | Same Day 8 pattern eye twitch | Eye twitching; similar to other Day 8 events |
| 16:11 | Lac+Phen | 20s | Warning then pause then giggling eye twitch | She warned Dad as it started; pause; then giggling; eye twitching |
| 16:43 | Lac+Phen | Short seizure | Short one again | |
| 17:21 | Lac+Phen | Eye twitching seizure eye twitch | Dad not present; family friend observed; slightly longer than before but no benchmark for friend | |
| 18:11 | Lac+Phen | 23s | Proper laughing | Proper laughing; 20-25 sec |
| 18:27 | Lac+Phen | 23s | Proper laughing | Proper laughing; 20-25 sec |
| 19:31 | Lac+Phen | 23s | Proper laughing | Proper laughing; 20-25 sec; after first Perampanel dose |
| Day 9 · Fri 12 Jun · came home 16:00 | ||||
| 03:40 | Lac+Phen | Very quick hum | Very quick one, just hum | |
| 03:54 | Lac+Phen | Hum + one giggle | Opened eyes | |
| 05:05 | Lac+Phen | Hum/giggle sleep event | Same pattern; unsure if eyes opened | |
| 06:25 | Lac+Phen | Hum/giggle sleep event | Same pattern | |
| 06:45 | Lac+Phen | Hum then giggle | Opened eyes, back to sleep | |
| 07:40 | Lac+Phen | Seizure | Details not recorded | |
| 08:05 | Lac+Phen | Seizure | From bedside tracker | |
| 08:34 | Lac+Phen | Seizure | From bedside tracker | |
| 09:30 | +Vigabatrin | Seizure | After Vigabatrin started at 09:25 | |
| 10:05 | +Vigabatrin | Seizure | From bedside tracker | |
| 10:45 | +Vigabatrin | Seizure | From bedside tracker | |
| 11:15 | +Vigabatrin | 38s | Long laughter / not controlled leakage | 35-40 seconds; long laughter; small wee |
| 12:04 | +Vigabatrin | Seizure | Additional seizure later confirmed | |
| 12:55 | +Vigabatrin | 25s | Strong laughing | More aggressive, between best and worst phenotype |
| 15:35 | +Vigabatrin | 30s | Full-on laughing | Red-faced; knees gave a little; had to sit on Dad's knee; bashful asking nurse to remove cannula |
| 16:05 | +Vigabatrin | Very mild | Excitement about leaving | |
| 18:35 | +Vigabatrin | Seizure | Details pending | |
| 19:45 | +Vigabatrin | Proper laughing leakage | Proper laughing; urinary leakage | |
| 20:47 | +Vigabatrin | 25s | Firm giggling | 25 seconds; evening meds at 20:49 |
| Day 10 · Sat 13 Jun | ||||
| 06:29 | +Vigabatrin | 20s | Brief laughing | Woke up briefly, then back to sleep |
| 07:39:00 | +Vigabatrin | 20s | Brief laughing | seizure as she transitioned out of sleep |
| 08:30:00 | +Vigabatrin | 10s | Brief laughing | Whilst watching dinner |
| 13:55 | +Vigabatrin | 25s | More intense; reduced engagement leakage | More intense during; could not engage/talk during, unlike before when she could mechanically talk after the first ~5 seconds. Big wee (large leakage). |