Friday, January 24, 2014

Luke's recent seizure

About a month ago now, in the early morning hours of Dec. 21st, Luke had a seizure during his sleep.
It presented as a focal seizure.  Some irregular breathing, his right leg twitching rhythmically, he vomited all over his bed. All this while sleeping.

By God's grace, Luke was sleeping on the floor in our bedroom that night. My parents "happened" to be visiting. This was their last night staying with us, after having been with us for a month. So, they were staying in Luke and Caleb's bedroom and the boys were sleeping in our room. I was already in "light sleep" mode, as I had our newborn, Hannah, next to our bed.  I wake up to hear Luke breathing loudly....strangely....
I sort of look down at him, confused.  Truthfully, a seizure was far from my mind.

Luke had been seizure free for almost 4 years. 46 glorious months without that beast of a Seizure Monster in our lives. If you've ever seized or seen a loved one seize, you know what I mean when I say Monster.

I scramble around for my cell phone....eager to get some light on Luke's face to see what exactly he's doing.

Is he having a bad dream?

Did he catch a cold and get congested during the night?

But, as I put my hand on him to try to wake him up, I felt his leg.  Back and forth. Back and forth. 

Still confused, I try to arouse him from his sleep. Nothing.  Next, I notice he had vomited.   At this point, I realized that something pretty major was happening and most likely it was a seizure.

I start calling out, "Andrew. Andrew.  Andrew, wake up! There's something wrong with Luke here.  Maybe a seizure."

Andrew pulls Luke up off the floor and we bring him to the couch to try to get him to wake up and talk to us. Luke is mostly unresponsive to our efforts though. He cried some...but mostly just a whine/groan type of thing. Once he got agitated enough with the bright lights in the living room and our talking to him, then he started fighting us a bit. That's when we notice that the right side of his body was in full paralysis. His right leg and arm were stiff. The right side of his mouth drooping.

Go time.

"We have to take him now, Kristi!!"

Your house (or apartment in our case) has that "feel" to it in the middle of the night. I had grown accustomed to it again, having been getting up with a newborn in the night for the last month.

Dark. Quiet. The hum of the fridge running. Street lights streaming through the window. Peaceful.
Suddenly, in the quietness, there's chaos.

Talk about scrambling. I run to knock on my parents' door and let them know we're leaving for the ER. Andrew scrambles to find Luke's coat and socks.  I'm quietly thanking God that despite laying right next to Luke on the floor, Caleb is sleeping soundly and oblivious to all this madness.  I realize that our trip to ER may last for hours and that my nursing newborn will have to come with us.

As we scramble out the door, the only soundtrack now is the sound of teary, desperate prayers being offered up in the darkness. Not in any language we can understand...but one the Spirit helps us to pray.

We drove down Lake Shore Drive to downtown Chicago in record time. Probably 14 minutes flat...though it seemed much longer, of course.  We arrived at Lurie Childrens Hospital and had attentive staff and a team of people ready to help us.

Then commences The Great Medical History conversation. It's a doozie!  Whenever we're asked Luke's medical history, it was always starts with raised eyebrows and a deep breath. Here we go. Start from the beginning. It's a long story, to be sure.

Various people come to talk to us. ER docs. Neurologist. Nurses.  We sit and we answer questions. And we watch as they all do their thing...get IV lines in, take vitals, rub Luke's head while talking to our sweet boy. And we cry.  Cause we were sure we were done with whole nightmare. I can honestly say, I thought we would never have the Seizure Monster knock on our door again. But, here we were. Answering the same questions, facing the same fears. Despite the four-year reprieve, it all felt too familiar.

They ordered a CAT scan to rule out a stroke. That came back normal. They monitored his paralysis, his breathing, his blood pressure, his heart rate....the usual. After about 2 hrs. he regained movement on this right side. Luke was sound asleep during this whole time. But we could tell the right side of his face was looking more normal and the hospital staff aroused (read: annoyed) him enough to get him to kick them with his right leg.

Like most hospital visits, there was mostly just a whole lot of waiting. And praying. And calling. And emailing.   Thank you so much for those of you who prayed for us that night and the next day....and in the days that have now followed. 

After 2-3 hours of testing and waiting and monitoring, the ER neurologist finally came in and said, "Well, given your sons history, this is what we would expect for him to do.  The infantile spasms resolve and then these kids usually go on to develop a different kind of epilepsy....or many different kinds over the course of their lives. We recommend starting him on Keppra and we'll send someone in here to train you on using diastat, the emergency drug you administer should he ever have a seizure lasting longer than 5 minutes and you're waiting for emergency services to get to where you are."

Of course, it wasn't quite this cut and dry...and she was a kind lady. But, basically, the message was, "Oh, you have had four years of seizure freedom?  That's great!  But, yeah, it looks like he'll end up doing what we would expect him to do.....seize. So, let's just get him on meds."

If you've followed our journey, you can imagine how hard that was to hear!

We wanted to shout, "NO!!  He isn't just 'going to have seizures'!! We're not gonna just 'start the meds'!!"
We didn't shout, but we did communicate those feelings to her. We asked if it would be totally unreasonable to not give him the meds for now and to wait to talk to Luke's neurologist and get an EEG first. She agreed that that wouldn't be totally unreasonable.

Dec. 21st isn't a great time to have a seizure that requires an EEG and follow up with your neuro. It seemed EVERYone we needed to get appointments with was out of town or otherwise unavailable for weeks.
Which is why it has taken us so long to get an update out.

Here's where we stand now:

1) We are treating this seizure as "first time offense" so to speak. Because it has been so long since he has seized, we are considering this Luke's first seizure. If any neurologically healthy child seized once, they wouldn't medicate. They would wait and see. That is what we are doing with Luke.

2)  Luke's neurologist, who we really like, agreed to let us hold off on the Keppra (the daily anti-seizure drugs).  If you're asking, "Why don't they just give him meds? I've known lots of people who take seizure meds and do just fine." Good question!!  The answer is that back in 2009, Luke responded terribly to anti-seizure meds. None of them helped the seizures and one actually made them get worse. They also tend to have pretty intense side effects, none of which you would want to deal with on an ongoing basis. Luke is really beginning to make some great strides in communication and cognitive skills. The seizure meds tend to put kids into a fog....to delay their development.  We, of course, are striving to go in the other direction.  He is already so delayed in so many areas....a drug that would further delay development doesn't sound like an answer to us.

3) There are some circumstances surrounding the seizure that make us wonder if it wasn't somehow provoked. He didn't have a fever, but he had been fighting a bit of a stomach bug. He had recently had a flu vaccine (the flu mist). We have had a lot of changes in our family over the past couple of months.  The holidays brought lots of changes to our schedule and probably less sleep than normal. Any of things...or perhaps all of them together, could have been just a little too much for Luke, according to his neurologist. Sometimes with kids like Luke, while they don't actively seize, their seizure threshold is low. They would seize more easily than another kid might.

4) His EEG came back ABNORMAL. We just got this news a couple of days ago and it was disappointing news to hear.  Since April of 2010, Luke has had 3 completely NORMAL EEGs. This is the first time it has been abnormal in almost four years. The results of the EEG read that focal discharges were seen in the right temporal lobe. No clinical evidence of seizures was seen. Simply, this means, abnormal discharges were observed, but he didn't physically show evidence of a seizure while he was hooked up to the EEG machine. But he is what they would consider "at risk for seizures".   As I said, this is a definite change from the results we just had less than a year ago (Feb. 2013), where the EEG was totally normal.
The EEG findings are a bit strange and don't really coincide with what we saw during his seizure event.  His right leg twitched and his right side went into paralysis.  Typically, you would think you would see abnormalities on the LEFT side of his brain, in order for his RIGHT side to be effected. So, in that way....we are kind of left guessing. An EEG is a good tool for neurologists to use, but they are always quick to tell us, it isn't a perfect test. We take these results and tuck them away...but are still in "wait and see (and Pray!)" mode.

5) We haven't seen any other seizure activity since the Dec. 21st event. We thank God for that!

Here are some things you can pray about.  I hope to update here more often about Luke and his progress. It's been a long time since I've done that.  For now, here are the best ways you can agree with us in prayer.

* First, pray that Luke never has a seizure again. As we said in earlier posts about this...We believe Luke was and IS healed of all seizure activity.

*Please pray that we as parents and all of his teachers, therapists and other school staff will be very attentive to Luke and not miss anything that we should be seeing.

* Please pray for peace in our hearts. We want to be attentive, but not fearful. Fear is not of God. And, despite the recent events, we want to walk free from fear and continue trusting in our great God!


Thank you all so much for your love and prayers. It means so very much to us.