Tuesday, March 13, 2012

more about febrile seizures: stewart's story

When I posted that Evan had had a febrile seizure, most of my friends were shocked and many had not heard of febrile seizures before. My friend, Amanda, who lives in California (I'M JEALOUS) has a son Evan's age who has also had a febrile seizure. I asked her if she would share her story with me and with my blog readers and she said YES! I feel it's so important to bring more awareness, even in this small way, about these seizures. I wish there were more answers, but there isn't. Amanda's story is startling, but it makes me feel closer to her and it makes me feel not so alone. Here's a picture of cutie Stewart and gorgeous Amanda and her story.

Stewart had his first seizure November 9, 2010 - he was 2 years old. He was acting perfectly fine before the seizure, he only had a very slight fever of 99 degrees. We did not give him any Tylenol as we felt it was such a low-grade fever that it would not do any harm. He was running around playing with my husband Iain, then all of a sudden he came up to me and wanted to sit on my lap.

I pulled him up to my lap and immediately noticed that Stewart was sort of staring off in the distance. I tried calling to him, but he wouldn't reply or even move. I frantically told Iain that something was wrong and Iain suggested we take him to the hospital if something seemed wrong.

Then, Stewart's eyes rolled up and he was not responding to me AT ALL. I yelled at Iain to call 911. Stewart didn't really shake or anything, but I knew he was having a seizure. My worst fear was that he had meningitis or epilepsy. I kept thinking over and over what it could be - WHY was he having a seizure??

Stewart's lips began to turn blue and that's when I became hysterical. I was yelling at Iain to tell the ambulance to hurry up. I kept saying "my baby, my baby!" It felt like it took FOREVER before the medics arrived. They were very good - very calm and reassuring, but I wasn't really listening to them. I was still crying while watching the medics take a small sample of blood (to test blood sugar levels), check his blood pressure and O2 levels. The medics took off Stewart's jeans to quickly cool him off.

 Stewart's seizure couldn't have lasted more than 5 minutes, but it felt like an enternity to me. Horrible thoughts kept creeping in, especially when Stewart's lips turned blue. I associated his lips turning blue with lack of oxyen and I thought my son was dying in my arms.

The medics (our local fire department), paramedics and doctor at the hospital told us it was a classic case of a Febrile seizure - we had never heard of it before. No other tests were done, and we were sent home. He was perfectly fine for the remainder of that night. However, Iain and I couldn't sleep that well and we took turns staring at him while he slept in our bed.

The next day we went to Stewart's pediatrician and she told us that his chances are now increased of having another Febrile seizure. Stewart has never had another seizure, but if he does,we'll know what it is and hopefully be more calm about it. Hopefully!

Our ped told us to always call 911 once he begins to seize -just to make sure his O2 levels are ok, etc (he has asthma). My mom is pretty much the only one that babysits him, and she knows what to do if he has a seizure.

We are worried that since it apparently runs in the family that Isla will get them too. I'll never forget being so scared, screaming and crying and being frantic. I was a mess. Reading your blog brought me back to that night. The scariest night!

Amanda, thank you so much for sharing with me and with us. It means so much. I am always thinking of you and your family.

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