Abby was born 6 weeks early, in July 2019, and had a rough start to life. When she was 1 day old she
had seizures and we were told to prepare for the worst. I’m not sure I’ll ever get over the shock of
giving birth early and the trauma of those first weeks. But after 4 long and harrowing weeks, she was
fully established breast feeding and we got to take her home, an equally nerve wracking and exciting
prospect.
She’d had brain scans and an MRI during her stay so we knew she had brain damage (HIE grade 2, Hypoxic ischaemic encephalopathy – damage due to lack of blood flow or oxygen and PVL periventricular leukomalacia – softening of the brain white matter) and a very high likelihood of having cerebral palsy and seizures. Because of that, we were in the
system and had access to the child development team etc.
In November that year I noticed her doing odd movements and she was diagnosed with focal
seizures at the beginning of December. The meds suppressed the seizures a bit but didn’t get them under
control. Her epilepsy nurses and neurologist were always at the end of the phone or email and kept
in regular touch. Due to Abby’s brain condition, looking back I suspect they were on the lookout for
infantile spasms as they would ask leading questions like if the seizures were happening in clusters. This
did start to happen, along with being sad afterwards and no longer smiling. The neurologist
explained that it could be IS and arranged for an urgent EEG which confirmed it. So then came
another hospital admission to start treatment (Prednisolone and Vigabatrin) on 1st April 2020, right
at the beginning of the 1st lockdown with my poor husband doing a frantic food shop as we then
had to shield.
Thankfully the meds worked quickly but it took until June 2020 for the focal seizures to be
controlled. We all enjoyed 9 months seizure freedom, and Abby’s personality and determination
really began to shine.
Unfortunately, the seizures crept back in Easter 2021 and an increase in meds didn’t help. At their
peak, she was having around 100 focal seizures / epileptic spasms in a day, with the occasional tonic
focal seizure too. We agreed to trial the ketogenic diet, which she started on her second birthday. The ketogenic diet is a carefully controlled high fat low carbohydrate diet which can be used as a treatment for refractory epilepsy.
Thankfully, Abby loves her food and has really taken to the diet. It quickly reduced the number of
seizures she was having by over 50%. We’re still tweaking the diet and her seizures are changing as
her body adjusts.
Abby’s a happy girl, who enjoys her food, cuddles, being outside, the bath, and being thrown about
(lots!). She gets on great at her nursery (which she started during her Vigabatrin wean) and enjoys
her weekly swimming session. Her cerebral palsy has been confirmed as spastic diplegic (stiff muscles mostly affecting her legs) and she’s also partially sighted due to CVI cortico visual impairment (her brain struggles to process the input from her eyes). She gets regular visits from her physiotherapist, occupational therapist and vision support teacher,
along with a host of other hospital appointments. She is loved very much and family are enjoying
spending more time with her as she becomes more settled and interactive.
Unlike many families, we didn’t have to fight for a diagnosis of IS, and it was the epilepsy nurses who
gave me the UKIST leaflet. The group has provided me with brilliant support and has been an
amazing resource.
Our November warrior Abby – food as medicine.
