NYU Hospital: Day 1

Today we checked into NYU Hospital for several days of video EEG (VEEG) monitoring. Hopefully we'll get a better handle on the increased seizures Evan's been having. We are also hoping to reduce Evan's meds. He currently gets medication six times a day and is taking way too many pills every day:


Evan was not happy about having the EEG leads glued to his head but getting unlimited time to play his DS is a plus. We think he looks like a sailor in his fancy EEG cap.


Tonight is my night to spend the night in the hospital and it's always an adjustment being here. There is a child crying in the next room, the little girl in the room with us is coughing as she recovers from surgery on her lung and I'm sharing a twin bed with Evan -- which is much preferred to the foldout chair a lot of parents sleep on!

Tomorrow morning they will draw blood to check medication levels and I'm hoping for the best on that experience. All in all everyone is in pretty good spirits and we're one day closer to coming home.

The Tracks of My Tears

So I'm a complete dork, in case you don't already know that, and was all teary driving into work today listening to Smokey Robinson on the radio...

People say I'm the life of the party
Because I tell a joke or two
Although I might be laughing loud and hearty
Deep inside I'm blue
So take a good look at my face
You'll see my smile looks out of place
If you look closer, it's easy to trace
The tracks of my tears...

So of course the rest of this is a break up song but we have had a rough couple days with Evan and the beginning of the song sort of fit how I was feeling.

On Monday Evan had another pretty bad seizure and today he had a bad toxic reaction to his medication so it's been a bit of a roller coaster. It seems like every week we are adjusting his medicine up or down or adding in something new. Evan is completely unfazed by all of it so we really have to follow his lead, but it isn't always easy.

Oh No, Not Another Weekend!

The weekend is supposed to be a glorious break from the work week, filled with family time, activities and a chance to kick back a bit. With Summer coming it includes the chance to relax in the pool and feel the sun on my skin.

Lately for us the weekends have also brought a big seizure for Evan. For the last six weeks Evan has had a seizure on the weekend and five of those weeks has required Diastat to stop it. Each seizure is longer than the one before and every time we use Diastat it takes longer to work. It makes me wonder if the Distat is working at all. Maybe each seizure is just ending because it has run its course. The question everyone asks is why does it always happen on the weekend and we have no answer for this. It is our question too.

We are still ramping up on the new medication and the lack of change in seizure activity is unsettling. I can see the difference in Evan and I know the seizures, even at a rate of once a week, are taking a toll. His balance is just little off, it takes an extra couple seconds for him to respond to requests and he's tired. We're tired too and as much as I look forward to the weekend, I also dread it just a little.

The Bitter Taste of Diastat

I will never forget talking to a mom whose child has severe epilepsy and constant seizures, and her surprise that we had never given Evan an emergency medicine like Diastat to stop a seizure. Her exact words were, "We use Diastat like candy." Those words have hung with me since I heard them. Here we were, two moms with the common bond of having a child with epilepsy and at the same time, worlds apart. She and I are still worlds apart but I am reminded of that conversation now and as I struggle with my desire for Evan to regain seizure control, I know she has those same wishes for her child.

We had to give Evan Diastat three times last month and I can only imagine what it must be like to think of this medicine as candy. Each time we gave him Diastat was the same: we hear a noise coming from Evan's bedroom and find him having a seizure. His eyes are wide open, but he seems to look through us and he's stiff and shaking. We get ready to give him the Diastat, a gel in a pre-filed syringe that is given rectally, and after administering it we wait for the medicine to surge through his bloodstream and quiet his brain. One minute passes while we sit watching, waiting while Evan seizes. Another minute goes by and maybe another as we sit helpless watching the ugliness of this disease. Finally it's over and Evan slips into a deep sleep. I want to throw up but don't. It's over. I cry.

I know that as horrible as it is to see Evan go through this, I am thankful for the Diastat. I understand the reference to candy. I still can't relate to thinking of it that way, but f I had to choose between a chocolate bar and Diastat, I'd choose the Diastat.

Three More Seizures, One More Drug

This has been a rough week for us. After Evan's big seizure on Saturday he had three more on Tuesday morning. These were different though and he was fully aware, completely lucid and we couldn't see any movement or shift in awareness or personality that would clue us into seizure activity. They were simple partial seizures and during the seizure Evan told us he knew he was having it and that he mostly felt weird in his leg, hip and butt. Later he said, "Seizures feel wierd and I don't think they're good for me. But you know what? Sometimes weird feels good." I guess if you're going to have a seizure this is the best attitude to have about them.

After calling the neurology office again, we are now increasing Evan's Trileptal, to a level we know could be toxic for him. The hope is to halt the seizures. We will watch him closely and pull back on the dosage if he can't handle it. The reasoning for this is because it is clearly time to introduce an additional drug (Lamictal) that will hopefully give Evan seizure control again and it takes several weeks to ramp up to a therapeutic dose. When the Lamictal is at a higher dose we'll start to pull back on the Trileptal.

So now we're waiting and watching and hoping for the best.

Just Joined the Diastat Club

There are some "clubs" you never want to join and this is one of them. Last Saturday Evan had a seizure that lasted too long and we had to give him Diastat to stop it. The seizure stopped quickly, so fast that it may have stopped on it's own or may have been helped slightly by the Diastat. Evan did really well with the medication overall. He was very, loopy and wobbly and with slurred speech was talking about the rules he'll make when he is President, then he went to sleep for about 20 min. and woke up hungry. He went to a birthday party in the afternoon and we all went to a friend's house in the evening. So as far as Evan is concerned, all is well.

As for Rob and I, we are feeling a bit defeated. We will get past this just like we always do but the rebound time is taking longer. The lack of control in a situation like this is burdensome and something we haven't felt in a while.

I think the worst part of the whole event was when Aria started a timer and said, "I hate Epilepsy." She's only 8 years old and should not have to know what epilepsy is much less have an emotional reaction to it.

One Seizure is Too Many

Yesterday Evan had another seizure and it was a long one. We woke up to him having a seizure and it lasted over five minutes. I really don't like that the length of each seizure is hitting the danger zone every time he has one. The last one was two months ago and was very similar to this one. After the seizure he was tired but popped out of bed when he thought he was going to be late for school and off he went, unfazed by the morning's events.

We spoke with NYU today and are looking at what medication options we have. We'll check his blood levels to see if there is room to increase the medication he's on and also consider adding an additional med. Tomorrow he'll have blood work done before school and the reward (read: bribe) has already been purchased. Pokemon to the rescue!