A friend from up north contacted me in the last couple days. Her cousin’s 11 year old daughter has suddenly started having seizures. Friday she had one, this morning another. They are currently at the hospital.
Now… I’m sitting here thinking of all of the emotions and thoughts that I know have to be going through their minds. And it occurred to me that there are probably a lot of people out there in the same boat… or a similar one… going through a lot of the same things.
Your first brush with a seizure isn’t necessarily anything to panic over. Lots of perfectly healthy people have a seizure in their lifetime and it doesn’t mean anything and it doesn’t lead to a diagnosis of epilepsy. That is what they told us when Amandya had her first episode.
She was in the school parking lot after school. I don’t have many details about what happened. I only got it second and third hand from the police officer and the EMTs who were there for her.
At the hospital that first time they did a CAT scan and blood work and a urine test and made sure that she was coherent and “ok” before they let her go. We got our one “get out of jail free” card (that was the way the nurse at the ER phrased it) and told that it would probably be good to at least follow up with our PCP the next day. She, naturally, suggested that we follow up with a neurologist… who told us that it was probably low blood sugar, lack of eating… low blood pressure… whatever and it REALLY was probably just a fainting spell.
But it was good for a little while to have a false sense of well being.
It lasted 4 weeks
The next seizure was actually 2 seizures within 3 hours of each other… the first one we went to the ER (no one told us that wasn’t where they wanted us right then). They discharged us telling us to follow up with the neurologist the next week… we got a mile down the road and she seized again in the car.
U-turn (how we didn’t hit something I will NEVER know)… back to ER… back to the same room and same bed that hadn’t even been stripped yet. Poof… ambulance was called and we were on our way to children’s hospital. She was pumped full of anti-seizure medicine and slept until the mext morning (14… 16 hours). We had EEG and MRI and lots of doctors visiting the room.
We came out two days later with a diagnosis of epilepsy, a prescription for diastat and keppra, and a lot of questions… a lot of fears… a lot of uncertainty.
Yes, it is scary (especially if you have tonic clonic seizures… what people have called grand mal seizures… but any seizure can be). When you start to think of all of the changes that you might have to face, it gets even scarier. But there are a lot of people in the same or similar boat as you are.
No, you are not alone. You might feel like it, but you aren’t. There are a lot of us out here that are in or have been in your shoes. Ask questions. Reach out.
No, you can’t run away and hide under a bridge or a rock or a really pretty tree. Running away won’t change where you are or what you have to suddenly deal with.
No, there is nothing magic that will suddenly make all of this go away. Believe me, I’ve tried. The adventure you are now on will maybe be long, will hopefully be short (the “getting to controlled” adventure) and will be extremely stressful.
Yes, I know that isn’t the answers you really wanted.
Make friends with the staff at your neurologist’s office. They will be the ones you have to deal with extensively for quite a while.
Be careful of bath tubs, hot tubs and swimming pools. It isn’t a great thing to be diagnosed when you are going through your “I’m trying to be independent” or “I am independent” parts of your life, but until you/your loved one… whatever… are controlled or at least semi predictable, your life has definitely changed for some period of time.
This is not medical advice. I am not a doctor. I don’t pretend to be on on TV. I’m a mom. I’m still just as scared (almost every day) as you are. I just don’t show it quite as often.
If I can do this, you can do this…. One day, one hour, one minute, one second at a time.