Hi I’m Nicole and my fiancé is Josh. Myles is our first baby together, he was first diagnosed with epilepsy when he was a week old, but we thought this was under control until he was around three months old when we noticed he was doing movements we hadn’t seen before. We took him to hospital because the movements was becoming more frequent and distressing for Myles, we were very lucky because the doctor on the ward had seen infantile spasms before and could diagnose him pretty much straight away. We had never heard of infantile spasms, so we went straight onto Google and finding out more information about it broke our hearts. He was hitting his milestones before this point, laughing and smiling and was such a happy baby and sadly he lost his smile and was like a empty shell. He started on vigabatrin and steroids and within a couple of days the spasms had stopped and he slowly started to smile again. Since then he was seizure free until he was weaned off vigabatrin, we had another hospital stay and he had a EEG and thankfully the hypsarrhythmia had cleared but unfortunately Myles still has high epileptic activity in his brain which he is on medication for. He is now 9 months old and he can’t sit, crawl or roll. Only time will tell but we know he’s a little fighter, we are so proud of him and will continue this journey hoping for some positives.
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