A New Trail in Mason's Journey with Epilepsy

Wow, what an intense couple of days it's been!!! Normally Mason has about 3 to 8 seizures per day. Yesterday, well over 300. Thank you to sooooo many people for praying for our family!!!!

I've probably forgotten some stuff already, or got things mixed up a bit, but here's the jist of it.

So back to the beginning of the story...

SUNDAY, April 11

Mason, Sydney with her friend Liv, and I were down in the US at our trailer for the weekend, having a great time in the fabulous weather. Mason woke up really early Sunday morning so had a nap later. The drastic increase in seizures started after he woke, around 1pm. I didn't really pay close attention to them because he occasionally has clusters of seizures that settle down after a while. After a couple of hours I realized that they were happening every five to ten minutes. His forehead felt slightly warm.

Increased body temp triggers on-going seizures while on-going seizures increase body temp. And so it's a vicious circle until we break that cycle. The meds that work to stop seizures quickly for most people don't work for Mason. For some reason, Children's liquid Advil has helped in the past. It didn't even occur to me to give him some until 3:30! The seizures slowed down slightly for about half an hour, then started to increase again. At that point Mason started having a seizure every minute or two or three. When I realized that the Advil was not working we started packing up to come home. They kept going about one per minute the whole ride home, an hour drive plus border line up about 20 minutes. We went straight to Abbotsford Hospital. Liv's dad picked her up there, while Daryl and Auntie Kim and Uncle Tony joined me at the hospital to help out. Mason does not care for hospitals, so I needed all the man-power I could get.

The triage nurse got us in right away, so no waiting in the waiting room at all. We had to carry Mason in. In spite of the constant seizures, he remained alert and aware the whole time. And he tried with all of his 95 pounds and booming voice to fight his way out of there!

We did get him settled fairly quickly (great teamwork!!) then waited. Eventually they gave him some Ativan to stop the seizures. Later they gave him some more. It didn't work at all. Valium and Diastat are two other meds commonly used for this, but Mason has bad anxiety/behavior reaction to them.

The ER doctor came in and did the normal asking a ton of questions. It quickly became very clear she thought I didn't know much about seizures. (insert my hysterical chuckle here!) When I realized this, I informed her that Mason had had well over twenty thousand seizures in his lifetime. I don't think she believed me. I also told her that IV fluids have helped control the seizures in the past. Apparently she didn't believe me about that either, because she didn't order IV fluids.

They wanted to do some bloodwork. I tried telling the lab tech that we needed to have Mason on the bed and 'ready': Daryl laying across his legs, Kim across his hips, me across his chest and right arm. He also needed another person to hold Mason's left arm still. So what does the guy do? Totally disregards what I told him and sits down next to Mason with the rubber strap and starts telling Mason what's going to happen and asking him if he was scared, and why etc. So does Mason take all this calmly while understanding the tech's reasoning? Nope. He gets up and starts to bolt! And scream. Then when we try to grab him he turns to jello and ends up puddling his body on the floor over and over. Finally we get him on the bed and assume our positions. Thankfully the wonderful experienced nurse actually poked the needle into Mason's vein, but the tech wasn't quick enough to hand her the next tube and blood went squirting up a few inches and all over the side of the bed/sheet and puddled on the floor. (I have never seen that happen in real life before.) The nurse was pretty close to yelling at the lab tech. I sure hope he'll listen to parents in the future!

His bloodwork came up all clear, no infections. They left an IV plug in his arm. Mason was fine with that.

Earlier when we had arrived in the ER, Mason's former pediatrician was at the counter talking on the phone. We hadn't seen him in years, so when he got off, I went and re-introduced myself (he didn't remember me until I mentioned Mason's name) So he came over and said hi to Mason while carefully and secretly poking and touching Mason in various neurological spots. I've seen Mason poked and touched by doctors enough to recognize what Dr. Traverse was doing. But officially he couldn't see Mason without protocol being followed. The ER doctor would have to refer him. Well that took nearly three hours. (in Mason's past ER visits, the first thing they do is call the pediatrician) I told Dr. T. about the IV fluids working in the past, he didn't seem to think that would work, but went along with it anyway. He left soon after that so didn't get to see that it did work! I am super thankful that he did listen to this parent!

So, with the combination of another dose of Advil along with the IV, the seizures started to slow down. Mason was very cooperative when removing the IV and off we went to go home with a prescription for Topamax, a seizure medication we had tried many years ago.

We got home at 12:30, gave the boy a quick bath and he was in bed and asleep by 1am. He woke up many times at night with seizures and he soaked the bed twice, due to all the fluids. I slept on a mattress on the floor beside him.

Something I learned: I need to plan ahead (during the drive in) to be assertive with the medical staff.

MONDAY, April 12

Well, I woke up at 8am stumbling out of Mason's room, longing for more sleep. Mason, on the other hand, woke up all perky, bouncing out of his room making scary pirate sounds, arghhhh, at the cats, and giggling with delight as they took off as fast as they could. I'm in total shock that he can wake up so happy after such a lousy night!

Mason was still having a significant amount of seizures today. I'm guessing 50 to 80 seizures throughout the day. The Advil seems to be working better with his seizures slowing down for a couple of hours, any way. He did wake up with a mild rash on his face, but have no clue what it's from.

I spoke with Kelly, our nurse at Children's Hospital. Although there is really no way of knowing for sure what is causing this sudden increase in seizures, our best guess is that Mason is probably coming down with something. In spite of his temperature at the hospital being normal, I think it's slightly elevated above whatever his normal is. Even the slightest increase in his body temp can trigger seizures. Which means even a mild cold with a slight fever sends him into this state. Our biggest issue right now is that we have nothing that can stop the seizure/temp cycle any more, since the Advil is no longer effective as it was in the past.

So for now, it appears that we just have to deal with the seizures. Not much we can do about it. More 'Barney' theology: "can't go under it, can't go around it, can't go over it... have to go through it"

And the only way we CAN continue through this is knowing that Someone is there to help us through it! And from past experience, I know that this is part of God's GOOD plan, even when it feels horrible in the middle of the muck.

Psalm 18:6

In my distress I called to the LORD;

I cried to my God for help.
From his temple he heard my voice;
my cry came before him, into his ears.