Warrior of the week is back this week with the gorgeous Ethan. Thank you Marie Mace for sharing Ethan’s story.
This is Ethan, my 5 year old who was diagnosed with Epilepsy, West Syndrome & Infantile Spasms when he was 12 months old. Ethan started having absence seizures just before he turned one, we were in & out of a&e 9 times before they decided to keep him in & monitor him. Each time they told us that the seizures were convulsions due to a high temperature, but on all his notes, each time his temperature was below 35! I knew something wasn’t right. On being admitted to Alder Hey children’s hospital, he had another seizure only a neurologist was there to witness it & confirmed they were absence seizures & not convulsions! we were sent home with an appointment made to go back for scans & tests. From being sent home Ethan began to get worse and started to have seizures in clusters which were infantile spasms. They lasted 5-6 minutes each time but felt like a lot longer! we took him to his GP who sent him right up to hospital were he was admitted for 2 weeks undergoing brain scans, EEG scans, lumber punctures, blood tests you name it he had it done. Whilst in hospital he developed bronchiolitis & was put on an antibiotic drip. He slept for the best part of a week whilst in & out of seizures. it was the worst time of my life. The scan results came back and it was confirmed, my little boy had Epilepsy, west syndrome & IS.
He was started on vigabatrin, keppra & prednisolone, his consultant told us to expect to take our baby home a completely different baby and expect our lives to change. The only hope we had was to pray that the medication controlled his seizures. The first 2 months the medication wiped our boy out he slept most of the time, could barely sit up and had no energy or life in him. Thankfully the medication controlled his seizures and he was slowly weaned off them.
Everyday was a waiting game and everyday I was convinced the seizures were going to come back. Now, 4 years on he is 4 years seizure free, on no medication & no long term damage, & I thank my lucky stars every single day.
The subject was so taboo that I had to read up on it myself and rely on internet sources for information on what my little boy was going through. This page is the first I’ve seen on it and I’m sure, along with stories & support from other parents who have been through and are going through the same thing with their children that people will find the journey a little bit easier.