December 14, 2010

The Toughest Question

When I thought about the hard questions my kids would ask growing up, I figured the tough ones would be about where babies come from, if Santa is real, relationships and questions of my own experiences as I entered adulthood. I've already dabbled with answering the first two. I know there will be more questions that will test me, but I kindof know they are coming and in some small way I'm expecting them, ready or not. My approach has always been to be honest and give them small pieces of information until they are satisfied with the response.

Tonight as I was helping Evan get ready for bed, he caught me off guard. He looked up at me and asked in his sweet 7-year-old voice, "Mommy, do you think I'll have another seizure?" It felt like a kick in the stomach. I'm glad he's old enough to talk about his epilepsy and how it impacts him but it also means he's aware enough of the seizures to initiate a conversation. I smiled weakly and said, "I hope not" to which he responded, "I hope not too." He said he hoped he didn't have one on Christmas or Christmas Eve. I told him about the seizure he had last year on Christmas Eve and how he woke up in the morning, opened presents and had a great day, just as if it had never happened. I assured him that if he had a seizure we'd take care of him and he'd probably feel fine my morning and he seemed to agree with that.

This conversation was spurred by a seizure Evan had early this morning. It was only 3:30 am and it lasted 15-16 minutes. We gave him the rescue medication we keep by our bedside and after 5 minutes when the seizure wasn't stopping we gave him another dose and called 911. By the time the EMTs walked into the house Evan's seizure was ending. We didn't go to the hospital, but this is the longest one he's ever had. Evan always goes back to sleep and wakes up at the normal time for school, often not remembering having had a seizure. But he remembered this one -- I guess it makes more of an impression when a bunch of paramedics arrive at the house.

As the sedative effect of the medication took hold, Evan told them with his eyes closed that if he was going to ride in the ambulance, he wanted to go to the hospital in New York. We all chuckled and I thought, yep, that's Evan, even as he drifts off to sleep he's cracking jokes.

I'm sure there are more tough questions to come on this topic, but in some small way I'm expecting them, ready or not.

November 28, 2010

One Less Dose!

Too many meds...

Evan seems to be having a slight medication interaction again. We increased one of his meds and it interacted with his Trileptal and he started having double vision. I'm so glad he is old enough to tell us what's going on. As a result of this new development we have pulled his 4pm dose of Trileptal and we are now down to giving Evan medication four times a day! Time to change the chart!

November 21, 2010

Why is Evan Having Seizures?

Last week we talked to Evan's neurologist about all kind of things. We only want to know two things:

Why is Evan having seizures?
How can we make them stop?

Unfortunately these are the two hardest questions to answer and there are no easy answers to either question.

Evan's on a lot of medication and is currently taking three meds that are spread out over five doses each day and just to keep us on our toes, no two doses are the same. He takes 19 1/2 pills every day. Some of them he just chews up and others we crush and mix with something to minimize the bitter taste. What's interesting is that when we talked to his doctor she told us that she got the results from his recent blood work and he is hypermetabolic and none of the medications are at a therapeutic dose for him (although with the amount he's taking, they should be). For some reason his body is processing all this medication so quickly that it isn't staying in his bloodstream long enough to be considered therapeutic. This is common with kids and can make treatment challenging to say the least.

Evan had another seizure this morning and we began an aggressive increase of medication to try to stop the seizures which are still happening every 7-14 days. On the up side there is hope because maybe he just needs a significantly higher dose to get things under control, but we've been down this path before with seizures that medication couldn't touch, so we are nervous about their effectiveness.

As for Evan, he is so strong...he had a seizure at 7am that lasted 7-8 min, we gave him an emergency medication to stop it (the amount would probably knock out an adult for several hours), he cat napped for 45 min. and was ready to go. He was a little off-balance and his speech was slurred for a half hour, but that didn't slow him down. At 1pm I took him to a birthday party at a Kiddie Gym and he ran around, climbed all over the equipment and finished it off with a ride on the zipline and a slice of cake. Life is good.

October 22, 2010


We seem to have the bus situation worked out so we're not having an irate Evan every day when we pick him up. He's so perceptive, even at six years old, that he immediately recognizes when he is being treated differently. Clearly, this will be our challenge. There are certain times when Evan needs special accomodations that result in him being treated differently and it's a tough situation to navigate...

He gets picked up early from school every Wednesday for PT and feels special because he gets to walk to the front of the school with two buddies.

He is selected for a pull out session for advanced academics and is furious that he has to leave his classroom.

Loves his private physical therapist; HATES the adaptive PE instructor and told him as much.

It doesn't help that Evan is also on a medication that is known to cause extreme irritability and aggression. We can sometimes see that he is trying to manage the chemical change but when he loses it (usually emotional tears rather than aggression) I have to just take a deep breath and choose my words carefully.

September 17, 2010


Today Evan got off the bus teary-eyed because, although he didn't have the words for it, he was a victim of discrimination. Not by some mean kid, but by the transportation department of the school system. They didn't say he couldn't ride the bus...they know that's illegal and would never do such a thing.

But they did single him out because he has epilepsy and insist that he ride sitting by the window and next to an adult who has been assigned to him. It took Evan two weeks to bring this up to us but apparently after today he couldn't take it anymore. All Evan wants is to be able to sit wherever he wants on the bus and with his friends. All Evan wants is to be treated like everyone else. Seems a simple enough request.

My guess is the the transportation department just wants to keep Evan safe. Unfortunately, by making him sit next to an adult they have singled him out as being different in a situation where it was unnecessary. My expectation is that next week the "assigned adult" will sit in a different seat where he can be close enough to see Evan.

Friday afternoons are not productive for dealing with such issues so I'll detract my claws and wait until Monday, however, my manicure is already scheduled for Sunday.

August 27, 2010


Anyone who knows me, knows I am pretty much always able to put a positive spin on things. I can turn any comment into a compliment and am generally a pretty positive person. It's a gift and a curse.

Right now I'm struggling with that very thing. In the last two weeks, Evan has had two seizures that have lasted over 10 min. The scary thing is that each seizure he has is longer than the one before. Just to give a little context: A seizure that lasts over 5 min. is considered dangerous and the concern of brain damage increases with the length of the seizure. Evan is having cluster seizures (lots of little seizures a couple seconds apart) so his brain isn't constantly seizing during the full seizure. We were told not to worry unless they reach 10 min. That was several weeks ago when they were only 5 min. long. Tsk, ONLY 5 min. long seizures -- I never thought I'd write that!

Every seizure requires us to give him a rescue drug to try to make it stop and they are happening in the wee hours of the morning in his sleep. Unfortunately they are also happening while we are asleep so we have taken to having him sleep in our bed so we'll wake up. The up side: we have a glorious new king sized bed... however, I'd share a twin bed with Rob for a lifetime if we never had to deal with this again.

Sleep, I've learned, is over-rated and craziness is something to embrace.

How does Evan feel about all this? In a word: unaffected. He wakes up in the morning, gets out of bed and acts exactly the same as he does on the days he doesn't have a seizure. Sometimes his balance is a little off but that's about it. Sometimes he remembers it, sometimes he doesn't. We talk about it at breakfast and go about our routine. I suppose this is the bright side I should cling to, that Evan handles it better than us.

I just looked at him, sprawled across or bed, somehow managing to fit across the whole king and I am reminded how lucky we are. Two great kids who fill our home with love and makes a mom proud!

August 05, 2010

Insert Expletive Here

We got home last night after several days of EEG monitoring and some medication adjusting and everything seemed to be going well. Evan's EEG was calm and I was hopeful we finally had a solid dose of meds to keep the seizures at bay.

This morning at 5:30 Evan had another seizure. (big sigh)

So tonight we upped his Keppra. Again. We have seen some improvement with this drug and as we've increased it, we've seen his seizure activity go from once a week to once every two weeks and most recently 2 1/2 weeks between seizures. Our fingers are crossed that with this increase we will have seizure control.

August 04, 2010


After four days of video EEG monitoring, we are going home! Evan's EEG was pretty clean witch is good and we are beginning the process of reducing his Trileptal. This is the last meal in the hospital after Evan had the EEG leads removed -- true bliss for the kids: chicken tenders, chocolate pudding with graham crackers to dunk, ice cream and to top it all off, watching TV while eating! Evan told the med student that he liked it there and wanted to stay 70 more weeks, to which the med student replied, "We'll leave at the same time!"

After leaving the hospital we went back to the Ronald McDonald House and after grabbing a quick bite to eat joined a House trip to Central Park Zoo. They shuttled all of us there and we enjoyed a private party at the zoo complete with ice cream. They fed the sea lions and put on a little show and then all the kids got to take a turn feeding them too! It was a great evening and a perfect way to end our stay in NY!

We are on our way back today and I think we're all ready to be home. We are keeping up with the tradition of leaving NYC seizure-free and are hoping to keep it that way!

August 02, 2010

NYU Hospital: Art Therapy

This is the most common scene in our room and it's not easy to tear them away from their DS games...

Unless it's for art therapy!

July 31, 2010

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.

July 20, 2010

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.

June 14, 2010

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.

June 01, 2010

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.

May 13, 2010

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.

May 10, 2010

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.

April 22, 2010

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!

April 21, 2010

Tracking Evan

Tracking Evan won the Filmmaker Award and the Fan Favorite Award at the American Academy of Neurology's Neurp Film Festival! Congrats to filmmaker, Peter von Elling!!

February 24, 2010

Another Seizure..Enough Already!

Yesterday Evan had a seizure and it was a big one. It's nice that he isn't having them every day anymore, but how quickly we are derailed when he does have one. Nothing makes me feel more helpless than watching Evan have a seizure. We watch at the sidelines as his body is gripped by something out of his control, out of our control. And we can't make it stop or can't take it away.

So we watch. We hold him, we stroke his hair, we tell him he's safe, we time the length or the seizure, we worry. This one lasted too long, upwards of 5 minutes -- we don't know eactly how long it lasted because when we woke up he was already having it. You start to worry at the 5 minute mark, it's when you administer a rectal medication to stop the seizure and call 911. Rob called 911, I popped the cap of the drug, and on its own the seizure stopped. Just like that it was over. Rob told the operator Evan was ok, that we didn't need an ambulance. Evan, exhausted, went to sleep. I went to work. Back to normal...but the reality is we don't have "normal".

We were more shaken by this than Evan who woke up a little while later saying he was feeling great and wanted to go to school. He missed the bus as he slept off the remnants of his seizure so Rob took him to school -- Evan walked in as if nothing had happened.

February 14, 2010

Happy Valentine's Day!

I just want to take a minute to wish everyone Happy Valentine's Day!

This photo is representative of Valentine's Day last year. A couple weeks before Valentine's Day we were in New York with another hospital visit and video EEG for Evan at NYU Hospital. We were staying at the Ronald McDonald House of Long Island and as I walked up to our home away from home, I looked down and this image stopped me in my tracks.

How fitting to see this just a couple weeks before Valentine's Day while walking up to a place who's tag line is, "The House that Love Built". I took the photo and didn't post it last year because I thought it felt like such a cliche -- love peeking though the snow... oh, please. A year later the photo still hangs in my mind so there must be something there. The truth is, when I was stopped in my tracks, I was feeling a bit sorry for myself. I had a child in the hospital, was tired from sleeping there, and was a little cranky about schlepping through the snow. I wanted to be home.

But here I was staring at a single brick that seemed to carry a message just for me. I have looked down at this walkway many times, each brick purchased by a different person and engraved. It's a long walk through names and families and I've been awestruck by the experience every time. I saw this word shouting at me from the ground and the irony was not lost. I lead a charmed life filled with love and I should never forget that. Sometimes a single word can have such impact.

February 13, 2010

Dear Seizure Diary...

Not too long ago, Neurology Now did an article about logging seizures and compared different ways of doing it. I'm so glad they wrote this because it is so important to understand an individual's seizure activity in order to provide doctors with complete information. Doctors always make medical decisions based on what we, as patients, tell them and we should take that seriously and give them the best information we can!

Seizure Tracker was mentioned in the article and we were really happy to see what they said...

Neurology Now: Dear Seizure Diary

Since the article ran we've been getting a lot of emails from people who got the magazine in the mail or saw it in a doctor's waiting room. It feels good to know we are making a difference!