This was the date and time G had his first seizure. He zoned out, went pale, his lips turned blue, his tongue quivered, and he stopped breathing. It lasted 45 seconds, and then was just out of it for about 5 minutes before he started crying and came to his sense . He was at school, and his amazing school immediately called me, although I was across town. We made the decision to call 911 and I met G at the local children’s hospital. His sweet teacher went with him in the ambulance since I couldn’t get to the school fast enough. I heard him before I saw him as he was wheeled to his room – he wasn’t happy about being strapped down!
I was so glad to see him and fortunately pictures of our dog finally calmed him down. We waited for an hour for the ER doc to see us, then another hour while they called a neurologist for a consult, and then sent us home.
We have always known seizures were a possibility for G….as the years went by, we became more and more hopeful he would miss them….We are so grateful that the school managed the situation so expediently, and I know they managed it much more calmly than I would have. The ER didn’t seem too concerned and sent us home fairly quickly with instructions to follow up with a neurology clinic within the next week.
We met with the onset clinic this week, and G had an EEG with “normal” results. Usually with one seizure they wouldn’t jump to medication, however, because G has other underlying brain anomalies, they recommend we get him started on meds. If he is seizure free for 5 years (usually 2 years, but because of other brain issues, they say 5 for him!), then we can look at getting him off of them. Medicine 2x day for the next 5 years (or forever!) does not seem fun. He also prescribed an emergency medication which we give him if he has a seizure lasting 5 minutes or more.
A friend whose child struggled with seizures explained to me that it’s like a little part of their brain is fried each time it happens….one, two, a few seizures, not too big of a deal – but when they become frequent, it’s a bigger issue and we talk medication. We are most concerned with regression – G has worked so hard to get where he is, and it would be so hard to see him taking steps backwards. I know he is a fighter no matter what and will push through it, but we are really praying this is a rare occurrence and not a regular one. We are hopeful the medication we are starting with has minimal side effects (irritability being the most common one!), and that it works!
Thanks for your continued prayers, love, and support! As you can see, he is still the happiest dude around 🙂