It was a typical Monday morning in the Stark household. Miki, Maddie and Jacob were up at about 5:30am. I decided to stay in bed instead of going for my morning walk, due to the rain (lazy ass!). I got up about 6:30am and Miki was preparing the kids’ breakfasts while I prodded Kylie to keep moving (Kylie’s not a morning person) and get ready for school. Miki left about 7:00am for work and Kaden was still sleeping.
About 7:10 I went into my bedroom to check Kaden on the TV (we have a night vision camera in Kaden’s room so we can see him while he sleeps). When I switched over to the camera I thought, “Okay he’s moving, time to get him up.” Then I noticed how he was moving… rhythmic jerks. I sprint across the house, nearly ripping the door off the hinges to his room. When I get to his bed my fear is affirmed. Kaden is having a seizure.
Now, Kaden had something called infantile spasms when he was about 8 months old. These are a form of seizure and was related to his mitochondrial disease. We were told then that there was a chance he may develop seizures later in life but there was no way to know when or if it would even happen. The fact is, once you’ve had any type of seizure, you are more susceptible to them later in life. Kaden made it nearly 6 years and Monday it happened.
A lot of thoughts ran through my brain as I’m watching my 6-year-old in the middle of a seizure. First, is he safe. He sleeps on his side which is the best position when seizing so you don’t swallow your tongue. Second, how long could he have been seizing for? That’s important because anything over 5 minutes and I need to call 911. Third, stay calm because the other 3 kids are in the next room and I didn’t need them freaking out. Fourth, call Miki and get her back home. Now there were other, darker thoughts that I don’t want to rehash but after I entered the room the seizure only lasted another minute and a half (felt like an eternity).
So now that the seizure is over I pick him up and take him to my bedroom. When we get there, he is unresponsive. If I thought the minute and half seizure was bad, now the clock starts ticking on the scariest eight minutes of my life. Kaden’s eyes are open staring off into nothing. I talk to him, snap my fingers, call his name… nothing. No movement, no response. I know he’s breathing I can see his chest moving up and down, but now I start to wonder how long did the seizure last. 3 minutes. 5 minutes. 10 minutes. Can’t be more than 10 minutes because Miki checked him before she left. By this time I’m starting to really panic, Miki is on her way so I lay down next to him and start hugging him, stroking his hair and face and talking to him. Five minutes and no response. Now I’m thinking, “did I just lose my son.” Then I scold myself, “NO, he’s breathing we’ll get him to the hospital and they can give him medication that can help with damage done from a neurological event like a seizure.” I keep talking to him and still no response and no movement. His eyes aren’t even blinking. This is unbearable.
Then it happens… he answers. I have kept asking him to talk to me, asking if he’s okay, telling him how much I love him. And he finally answers, “yeah”, he blinks his eyes and starts to move a little. WOW, relief! I found out later that this behavior is actually normal after a seizure. Most people are completely spent after a seizure and sometimes it takes a while (as long as an hour) before the seizure victim is back to normal. That would have been helpful info. during those excruciating eight minutes.
Well, we ended up calling Kaden’s doctor and he recommended that we take Kaden to the emergency room at Childrens’ Hospital. So we did. That was pretty much a waste of time as they checked him out and said, “He looks fine. Can you describe the seizure again.” I respond, “Okay, but I have already told the first four doctors that came to look at him.” The good thing was that he checked out okay. The ER doctor spoke to neurology and said we could go home and just follow up with Kaden’s pediatrician and neurologist. They did give us a prescription for an emergency seizure medication in case Kaden were to have a seizure lasting more than five minutes. We make it home by about 11:30am and speak to the neurologist on the way home. She tells us if Kaden has another seizure or we see any signs that Kaden is having trouble that we should bring him back and they would admit him into the hospital.
By the time we get home Kaden was doing well and he ate a big lunch. Miki decided to take advantage of all of us being home and took Kaden to pick up his new glasses at the optometrist. While there, Kaden has another small seizure. We call the neurologist and by 3:00pm we are back in the hospital. Kaden had a third seizure right when we got into his room which everyone got to witness. The weird thing is that during the second two seizures Kaden was coherent and answering questions. In fact, in typical Kaden fashion after the third seizure that lasted about three and half minutes Kaden says, “all done”. Like he’s apologizing for it. He’s such a tough kid.
They decided to forgo the EEG on Monday and gave him a large dose of Phenobarbital to get the seizures under control. This however knocked him out at 5:00pm and he didn’t wake up until 7:00am the next morning. Because it’s a sedative, Kaden was rather ill on Tuesday and couldn’t keep any food down. Finally Tuesday night he ate a good dinner, kept it down and got another good night’s sleep. The doctor’s switched him over to a drug called Keppra which is much more mild than Phenobarbital. Today he was still pretty out of it but much better than yesterday. We were able to come home about 11:00am this morning and Kaden seems better just being at home.
So now we have a lot of follow up over the next couple of weeks. The doctors feel the medication should control the seizures and life will move on. I think Kaden just likes to prove how tough he is from time to time. Well… that’s all for now. I have been saving up all of the fun stuff we’ve been doing this summer along with an upcoming surprise set for October, so I will post again in a couple of days with some fun stuff. Thank you to everyone for your thoughts and prayers. We are so lucky to have friends and family who give us so much support and love.