10 months old
Marco was diagnosed with SW at 2 months old. Apart from the emotional aspect and the uncertainties of our baby’s future, we struggled with finding a dermatologist that would treat him initially. We also struggled immensely when he had his first seizures at 7 months old.
It started when he got a cold. Due to congestion he wasn’t sleeping well. Little did we know that lack of sleep triggers seizures. Of course we were hoping he would never get one but he did. His seizures are ‘focal seizures.’ After an MRI they found a small calcification on the lower left side of his brain. This could affect vision, but at the moment he is fine in terms of eyesight (although his right eye is affected by a low pressure glaucoma). When he seizes, both his eyes turn down to the right side and they tremble a bit. His oxygen drops drastically so he looks very pale and doesn’t respond, while his heart rate spikes. He is currently taking medication (Keppra) and since then we haven’t seen another seizure.
It’s been so hard seeing him go through so much being so young. We have great doctors who care for him and the clearance of his skin after laser treatments has been great! The joy we have experienced has been seeing him develop in reaching his milestones, seeing him grow and smile despite all he has gone through.