BiographyIsaac is a twin to his angel brother who sadly passed away when they were born. He had Edwards Syndrome. Isaac spent 8 days in NICU as he needed some support with his lungs and he wasn't feeding well or maintaining his temperature.
He came home after 48 hours, but had a seizure and had to be readmitted. After many lumbar punctures, lots of prodding to find his veins and some very strong broad spectrum antibiotics, he was getting better again and feeding well.
Isaac had an MRI scan which showed widespread damage to the white matter of his brain, so it would be a monitoring process to see how he developed and what issues may arise.
In December 2022, at 6 months old, he started with some funny movements. Another trip into A and E and a fantastic young consultant noticed how his spasms were presenting. He had an EEG, which confirmed the diagnosis of Infantile Spasms (West Syndrome). He was put on a very strong and harsh treatment protocol which consisted of steroids and anti seizure medication (this mixture limits his development whilst he is on it). However, after 8 long months of the treatment, he came off all the medicines and has been seizure free since January 2023.
Isaac has eyesight issues which he is under the Ophthalmology team for. It's a wait and see journey whether he will need glasses or an operation! At the moment he is also enjoying some speech and language therapy as he doesn't say many words yet, but he is learning all the time!
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