Gabriel is six years old and was diagnosed with epilepsy at eight months. His moment is submitted by his mum Stephanie.
My six-year-old son Gabriel was diagnosed with epilepsy at just eight months old. I recognised his seizures at seven months but could see from photos that he possibly had them for longer. I described his symptoms and showed a recording of him “stretching and holding his breath” to our GP who referred us to the John Radcliffe Hospital in Oxford.
By this time – in Christmas 2012 – Gabriel was having up to 70 seizures per day. The seizures were brief but he lost the use of his left side and couldn’t be left to sit or play without someone being there beside him. We were seen by an amazing neurologist who thought that Gabriel might have had a brain tumour so he was rushed down for an emergency MRI. From that they discovered that he had a cortical dysplasia on the right side of his brain causing partial focal seizures and left side weakness.
He was prescribed to medication (carbamazepine) and was seizure-free until his first birthday four months later when he had a seizure whilst blowing out his birthday candle. The medication increased but Gabriel only remained seizure-free for a few days after each increase of meds until they finally stopped working.
When he was three, Gabriel was given sodium valproate. This caused him to stop walking and talking, his seizures were constant. It took three weeks to wean him off of it and he continued to take carbamazepine as well as clobazam. This kept his seizures to between two and 30 per day.
Gabriel is now six and still has regular seizures. Despite the constant bashing his little brain takes, he is in mainstream school and attends dance and martial arts classes. He is developing well and you would not think he had seizures if you saw him on a good day.
On 3rd December 2018, Gabriel had a stereo EEG. He had a six hour surgery to insert 14 wires into his brain. The surgeons sent electrodes down into his brain to induce seizures and to see which parts of his body would be affected if they were to perform surgery to remove the dysplasia.
He had his shoulder length hair shaved and we stayed in Bristol Royal Hospital for six days. We are currently awaiting the results of the stereo EEG to see whether or not they can offer surgery to give Gabriel some seizure freedom.
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