Harper’s Story: Exercise-Triggered Episodes, Abnormal EEG Findings, Then FND/PNES
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Kelly Moore is looking for families who recognise what has happened to her 11-year-old daughter, Harper. She is not asking strangers on Facebook to diagnose her child. She is looking specifically for people whose child had similar episodes, was initially labelled with FND or PNES, and was later found to have another explanation.
Harper’s first clear episode occurred in May 2025, around four months after mono/EBV. She was initially evaluated in the emergency department and diagnosed with syncope. The episodes continued, however, and developed a striking pattern: many occur during physical activity or heat. Kelly lists softball, basketball, kickball, tag, swimming, dance, gym and cheer. Harper can sometimes participate normally for 45 to 60 minutes before becoming tired, dizzy, nauseated, overheated, pale or sweaty, weak and extremely sleepy or “out of it.” Her heart rate sometimes rises significantly. She can also develop severe eye pain and headache.
During the episodes, Harper may become unresponsive, collapse or slide to the ground, and develop twitching or abnormal movements, usually involving her right arm and leg, as well as eye, facial or oral movements. The unresponsiveness can last 5 to more than 20 minutes, and at times she has reportedly been extremely difficult or impossible to wake.
The aftermath is not trivial either. Harper does not remember the episode and may have significant difficulty coordinating or using her legs, difficulty speaking, severe fatigue, nausea, eye pain and headache, followed by hours of sleep. During the most recent event she also lost memory for the preceding 24 hours, including recently making the cheer squad and recognition of her coach and teammates. Despite the difficulty using her legs after some episodes, Kelly reports that Harper has remained able to lift both legs, push and pull against resistance, move her toes and feel touch normally.
What has actually been found?
Harper has been evaluated by cardiology, endocrinology, immunology, allergy, physical therapy, sleep medicine and three neurologists, as well as receiving CBT and talk therapy. An echocardiogram and Holter monitor did not identify a cause. POTS was considered, but her cardiologist felt that she did not meet the diagnostic criteria. An overnight sleep study did not explain the episodes, while MRI was reportedly normal apart from sinus findings.
The EEG history is particularly important. A routine EEG did not capture an episode but was described as mildly abnormal, with epileptiform activity during sleep. A subsequent 24-hour EEG again failed to capture an episode but reportedly showed rare generalised spike-and-wave discharges during sleep entry. A five-day video EEG also failed to capture one of Harper’s typical episodes and was otherwise considered normal. Keppra was briefly tried but discontinued because of significant side effects.
Those findings do not prove that Harper has epilepsy. Interictal epileptiform abnormalities have to be interpreted in clinical context. But there is an equally important limitation in the other direction: none of these EEG studies recorded the event everyone is trying to explain. A normal recording between episodes is not the same thing as demonstrating that the episodes themselves are nonepileptic.
This distinction matters particularly when PNES is being considered. International League Against Epilepsy recommendations for children state that, where available, video EEG should be used in suspected PNES and that recording a typical event without epileptic activity can support a clinically established or documented diagnosis. Harper's five-day video EEG did not capture a typical event. That does not tell us what the episodes are; it tells us that the decisive event was not recorded.
The exertional pattern should not disappear
There is another feature here that deserves attention: these episodes repeatedly occur after sustained physical activity or heat and are preceded by symptoms such as dizziness, nausea, overheating, pallor, sweating, weakness and sometimes tachycardia. Exercise-associated collapse or syncope in children is a recognised reason for careful evaluation. Harper has already had cardiac investigation, but a negative echocardiogram and Holter do not magically explain the episodes either.
The blunt problem is therefore simple. “FND/PNES” is currently a label attached to Harper's unexplained episodes; it is not, from the information shared here, a demonstration of what is producing them. Her family has an 11-year-old experiencing recurrent exertion-associated episodes involving altered consciousness, abnormal movements, amnesia and substantial post-event symptoms. Two EEGs reportedly contained epileptiform abnormalities, while no EEG has captured the event in question. Whatever the eventual explanation turns out to be, those facts should remain visible rather than being swallowed by the diagnostic label.
Kelly is specifically interested in hearing from families whose children had similar exercise- or heat-associated episodes, prolonged unresponsiveness, abnormal movements, severe post-event sleepiness, headaches or coordination problems, particularly where FND/PNES was initially diagnosed and another condition was subsequently identified.
References
International League Against Epilepsy: PNES in Children — Scoping Review and Delphi Survey
Epilepsy Foundation: Electroencephalography (EEG) for Epilepsy
Please keep in mind: This person already has an FND diagnosis and is asking for help identifying possible differentials. Telling them it could be FND is not helpful. The question is whether something else might be worth investigating, whether anyone recognises the presentation, or whether there are useful tests, specialists or differentials to discuss with their doctors.
Please do not diagnose them. Share relevant experiences, research or practical avenues they could raise with their medical team.