My pregnancy and Arrabella’s early childhood up until October 2022 were completely normal. She was a bright, curious little girl who always wanted to know the “why” behind everything. She was caring, especially when her brother was born, and our home was constantly filled with music – something that hasn’t changed. Looking back, she had a few quirks we thought were endearing, but nothing that gave us any concern.
In October 2022, at age eight, she had her first seizure. We didn’t know it was a seizure at the time – she had just had a huge growth spurt, and I thought my husband had imagined it. We forgot about it until another episode in March 2023, and again in May. At that point, our family doctor referred us to the hospital but reassured us it was probably nothing.
On a trip to Disney World in July 2023, things changed dramatically. During the second week of our holiday, Arrabella had four episodes. She would suddenly go vacant, sometimes vomit, become very sleepy, and lose time. It became clear this was something serious.
In August 2023, her paediatrician explained she was experiencing seizures. Routine EEG and MRI tests were ordered before considering medication. Throughout the process, Arrabella was remarkable – calm, inquisitive, and brave. In September, she completed her MRI with astonishing maturity for her age. Days later, we received the call that something had been found. It was one of the worst phone calls we’ve ever had as parents.
We were referred to the children’s surgical team which our catchment fell under. They wanted to rule out cancer and ordered a repeat MRI using dye. They also asked if she ever laughed in an unusual way. I explained she sometimes had a cheeky little chuckle to herself, which we thought was just her personality, but they explained gelastic seizures usually stood out and were unmistakable.
Initially, Arrabella’s seizures were every three weeks, but after a bad weekend, she was started on medication. In October 2023, we learned she had a Hypothalamic Hamartoma. The surgical team felt it was unrelated to her epilepsy and decided to monitor it, since her EEG showed seizure activity in the left temporal lobe.
Between September and December 2023, she tried three different medications. Her seizures worsened, increasing to daily before settling at four per week. Higher doses caused dramatic behavioural changes – aggression, agitation, and rage we had never seen before. Each time she stopped to change medication, she went back to her normal self. I raised concerns, but her paediatrician suggested counselling, thinking it might be a delayed emotional reaction to her diagnosis.
By December 2023, I began researching the lesion myself. I discovered clear links between Hypothalamic Hamartomas and seizures. Through an HH support group, I connected with Erica at Hope for HH, who validated my concerns and offered advice. I also learned gelastic seizures can be mild, which we had seen with Arrabella. Families there told us certain centres had real experience in treating HH, so we requested a referral in January 2024 – which, surprisingly, was approved quickly.
We didn’t get an appointment until April 2024. By then, Arrabella was missing 2–3 days of school each week and losing heart. She couldn’t tolerate higher doses of medication without major behavioural side effects. The specialists we met provided excellent information and recommended connecting with an epilepsy surgery team we were unaware of within Scotland. They listed the next steps and stressed the importance of meeting a neurologist.
We felt deflated, as though nothing was progressing. We presented these recommendations to the paediatrician and things finally moved. Within a month, she met a neurologist who arranged an inpatient video EEG. Armed with research and guidance from Hope for HH, I felt more prepared.
The EEG didn’t capture the gelastic or dacrystic seizure on video, but by the end of the week it recorded complex focal seizures and revealed others occurring in her sleep. By the end of that week, her diagnosis was overturned. Four weeks later, in June 2024, she met with surgeons and was placed on the waiting list for surgery.
She was st
arted on another medication in the hope it would reduce the seizures as they had again increased. Between August 2024 and January 2025, she had around 5–6 complex focal seizures and 3–4 auras a day. A good day would be around 3–4 complex partial and 2 auras.
In January 2025, Arrabella underwent her first LITT procedure – the first HH patient her surgical team had used this technology on. For three days, she still had seizures, but then they stopped completely. We had four wonderful, seizure-free weeks, the best we’d had in two years. Sadly, the seizures returned suddenly the day before she was due back to school, at the same frequency as before. An urgent MRI showed the lesion had necrosis in the middle, but the outer area was still active.
Her second LITT was carried out in June 2025. The team felt confident to be more aggressive. Unfortunately, this time the seizures did not stop. In fact, they worsened once she came off steroids. Around half of her seizures are now followed by a difficult post-seizure period. Sleep helps, but it’s hard to manage with school and daily life. Doctors believe her brain is still healing and that time may help, but waiting is extremely hard.
Since the second operation, we have not noticed any gelastic seizures, which were never a major issue, but she now experiences 2–8 complex focal seizures and 1–5 auras each day. They fluctuate but worsen with fatigue, meaning she often needs a large nap every third day to cope. Her sleep has been disrupted since late 2023 – once a solid sleeper, she now wakes repeatedly through the night.
Arrabella is exhausted and frustrated. She wants relief and feels her friendships and education are suffering. She is naturally bright, competitive, and ambitious, but confides that she would give anything to feel “normal” again.
As a family, we are now looking at moving to an area where her secondary school will offer stronger support. Our hope is to give her the best possible chance to manage her condition, continue her education, and reclaim some of the childhood she feels has been taken from her.
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