Hi, my name is Lucinda and I am mum to Eliana who is nearly 8. Eliana was diagnosed with epilepsy just over 4 years ago and until then I didn’t know very much about epilepsy. I have spent the last 4 years learning as much as I can and raising awareness of epilepsy, different types of seizures and first aid care for seizures.
Eliana was born via emergency c section at 30 weeks due to severe foetal distress and no movements. She had to be resuscitated at birth and had neonatal respiratory distress syndrome. Eliana was placed on life support for 18 hours and at some point suffered a right sided brain haemorrhage. Eliana spent 5 weeks in hospital before coming home. The first few years other than a lot of chest issues Eliana’s health was stable.
Hypoglycemia seizures
In December 2017 Eliana had her first episode of severe hypoglycaemia. This has continued to happen on very random occasions and has resulted in over 20 ambulances. After lots of testing this has been diagnosed as ketotic hypoglycaemia.
Around April 2018 Eliana had her first absence seizure. These had probably happened previously but we didn’t know what they were at the time. In 2019 an mri confirmed the diagnosis of epilepsy as she has damage to the front left horn (opposite side to the brain haemorrhage at birth which has resolved). This type of damage causes electrical discharge that gives rise to epilepsy. This is unlikely to resolve as she gets older and may prove to be drug resistant.
At its worst Eliana was having up to 8 seizures a day with some of them lasting nearly an hour. She has focal, atonic and absence seizures. After trying various medications she is now settled on keppra. This has reduced her to having one or two seizures every few months now. It has also given her back the energy and spark which she had lost for a long time.
My wish is for more people to understand all that epilepsy encompasses. It’s more than what we see on tv and it impacts every area of our life’s and the life’s of those closest to us.
– Lucinda Joyner
