Many, many people, still to this day, tell me to "always carry a spoon with me and Avagrace will be fine! It shocks me to know that this is such a common-knowledge thing, because it is so very-very wrong! Read on and I will explain!
First let me share Avagrace's first seizure. We were at my in-laws house enjoying family time and wrapping up our last day on the East coast. We were blessed with a two week trip in February of this year. Brendan and the kids were downstairs in their living room-style basement. The kids were playing and dancing and the TV was on in the background. Brendan saw Avagrace fall while spinning and dancing. It wasn’t a hard fall, it didn’t even make him cringe or jump. She just fell backwards and bumped her head on the round coffee table, she then came forward onto all fours as Bren waited for a cry or a giggle. Instead she fell to the side and began to visibly seiz.
I was upstairs preparing lunch as Aidan came running upstairs to tell me something for the umpteenth time. Yet even before he spoke I could tell that this time was different. He is our 'always dramatic child' and so I took a moment to wash my hands and then followed him downstairs. Halfway down the stair case I heard Bren yelling and so I ran to him. He was on his knees with his fingers in Gracie's mouth trying to open her airway because she wasn't breathing, as I got closer I could tell that she was seizing. I started yelling call 911 as Bren's dad came out of the office to see what all the comotion was about. He called immediately and I told Brendan to stop doing what he was doing because you aren't supposed to put anything in a seizing persons mouth. He said that he had to keep his fingers in her mouth to keep her airway open. She was biting down on his fingers very hard but he thought he was saving her life. I didn't argue because he has had more recent training than I so I figured that he knew something I didn't. The 911 lady confirmed to my father in-law that he was suppose to remove his hands from her mouth but he couldn't bring himself to do it. He said that "next to Jesus himself" telling him to stop, he wouldn't have been able to. All I could do was pray loudly and continually tell Gracie to stay with us and that I loved her and that she was going to be ok! When she relaxed she was in and out of consciousness and she was so ashen and blue in the face. The paramedics had arrived just moments after the seizure stopped. They boarded her up in a neck brace and all and off we went to the Washington DC children's hospital. When we got there they did a CT scan and showed no damage to her brain and no fracture to her skull or neck. Because there was no damage, no bruising, and not even a mark on her, they were not confident that the fall happened before the seizure. They released us to fly home as long as we followed up with a neurologist as soon as we got back to Oklahoma.
I am going to end there to point a few things out. First, seizures can happen anytime anywhere. Epilepsy can start at anytime in life although it often happens before the age of five, and after the age of fifteen. Seizures can happen from head injury, high fevers, or unknown factors such as genetics. Epilepsy is actually a symptom more than a disease. It is a symptom of an unknown disease/condition and so it is the condition at this point. More research is needed to understand why people have these unknown recurrent seizures and what is causing their brain to misfire. A person does not have the diagnosis of epilepsy until they have had multiple seizures that were not a result of fever or head injury.
The second thing that I want to point out the reactions of Brendan and I to her first seizure. Brendan had never seen a seizure before. He has had training as have I in first aid/CPR and emergency response. Yet, when you see your own child in a situation it is very difficult to remember what to do. Since her first seizure Brendan has never put anything in her mouth and he has followed protocol during seizures, but knowing what to do is not always easy to follow. Me on the other hand, I am the loud one. "Breathe Gracie, Mommy's here, Lord please help my baby" I am talking to her during the seizure even though all the Dr's say she cannot hear me. When she comes out of the seizure though, she is exhausted, sore, and cold and wants to hear my voice. I will talk more about all of this as the month goes on but today I just want all of you to know the protocol of what to do during a seizure.
If someone is having a seizure here is what you do.
Make sure the person is lying flat on their back or on their side in a safe place. Stay with them and if you can cradle their head in your lap so as to raise the neck up a bit to assist in opening their airway as soon as they can breathe. When the seizure stops roll them to their side so if they vomit they will not choke.
Call 911. Some people say you should not call 911 unless the seizure lasts longer than 2 minutes. However, if someone has a seizure their brain will benefit from oxygen being given as soon as possible. Some epileptics may be embarrassed or mad that a fuss was made over them. However, a seizure is life threatening no matter how short it is. The greater care the better. Besides you never know how long it will last. I couldn't believe it when Gracie had one that was 37 minutes long. I thought it was never going to end!
NEVER PUT ANYTHING IN THEIR MOUTH! A person cannot swallow their tongue. They may bite it and bite it very badly, but they cannot swallow it. Someone asked me if they could bite it off, well I will double check before I answer that but if that would happen they would not likely swallow it, especially if they were lying on their side as soon as the seizure stopped. When the person is seizing their muscles are completely locked up. Swallowing cannot occur until the seizure stops. When the seizure stops people generally cough, spit, or throw-up. Then take in a big breathe. If a person is biting their tongue during the seizure, and you will know from the great amount of blood, rolling them onto their side will protect them as much as possible. Avagrace had a seizure during breakfast one morning, just as she took a bite of oatmeal. She dropped the spoon but had oatmeal in her mouth during the entire seizure. We laid her on her side and she spit the oatmeal out when she stopped seizing.
Spoons in the mouth have broken teeth, damaged jaws, and choked individuals when they did come out of the seizure. Tongue depressors have been broken off and have also choked people.
Restraining a person damages their muscles that are already locked and tense. A person needs to be left alone during the seizure unless they have a special medication that needs to be given like Avagrace. However, unless you have been trained to administer said medication do not attempt it. The medics will take care of that when they arrive.
Lastly, try to time it. I know that is very hard when you are in the midst of such turmoil. But it is very beneficial for the patient and doctor to have thorough notes on each seizure. I will explain more on this later as well.
So let it all soak in and please pass the word on.