Looking for the Goldilocks seizure

Spoke to Dr. Dlugos re the seizure activity and what it means. He said the intercranials are too small, they point to that northeastern region discussed in the previous posts (see avoiding infection and the NCAA tournament). The grand mals are too large though, pointing to the region east of the y-axis center line, but extending extensively into the region south of the x-axis center line. What that means is that if we operated on that information, they would remove so much that Lauren would lose feeling in her left shoulder.

So the plan is to put her back on some of her medication, Dilantin @ 50 mg x2 so that she will have smaller, more normal seizures. Hopefully, they will allow us to pinpoint the source for less invasive surgery.

I think they need to overstate the situation as they want us to encourage us to follow their plan. Of course this will take more time, but we want to be as accurate as possible. Eventually, it will come down to weighting cost/benefits. What would you trade for a seizure free life? Hopefully, the impact will be minimal.

Otherwise, Lauren has been feeling well, eating well, and generally happy. She is happiest with her peers here. Takes her mind off of things.

Jessica took off all week, so she will spend the night tonight with Lauren. Looking forward to a conjugal visit.

3-2 count

Inner cranials were reported last night but no grand mals. May be good to give he some rest, hopefully we will have some more big ones today. Seizure count to date: 3 inner cranial and 2 grand mals.

Rough Start

No more seizures last night. This morning was rough though. Lauren woke with migrane headache symptoms from the earlier seizure, we couldn't find our nurse, they wouldn't give her more morphine as she had 35 more minutes until 4 hour dose limit was up, and the resident was shining lights in her eyes and asking stupid questions like "Does the pain medication help you with your pain?" while Lauren lay there wimpering. I wanted to choke the resident, and the nurse for that matter.

That helped me decide that it was time to resume running, which I haven't done for the past 2 weeks.

Our primary neurologist, Dr. Dlugos, is on this weekend. He saw the recording of the seizure. Turns out it lasted for 90 seconds and started out as a smaller localized twitch that escalated. That is good as it is a more "normal" progression.

As I was here typing away peacefully, Lauren moans, I look over, and she is reaching out for the side of the bed, preparing to seize. Then she does at 1:15. Probably another 90 seconds. This is good. As it is daytime, everything works and everyone comes. Not much to be done but we talk about it and help calm her. The EEG screen on the wall was amazing. Like the lie detector pattern, but instead of the small area of unusual patterns like we saw with the intercranial seizures, these were all seriously bold and exagerated.

Right now, Sandra and I are unsure what to do regarding visitors. These seizures aren't pretty (for an example youtube grand mal seizures) and I see this as our "work time". Ultimately, we will leave it up to Lauren and right now she is out of it.

BINGO!

1:50 this morning, a grand mal.

No partial focal or breakthrough seizures here, she went straight to business.

Scared the shit out of me, but have to say, I have never been so relieved to see a seizure.

Of course, once I realized what was happening, I got up and started hitting the two buttons that 1) mark the EEG recorder to highlight the event and 2) set off this deep, gong type sound that alerts the staff. And nothing happened. I hit those buttons about 20 times, nothing. So then I hit the nurse call button on the bed remote which pages our nurse and the one on the wall above the bed which pages every nurse on the floor. Still nothing. So I went to the door and looked up and down the vacant hallway wondering why they didn't tell us they were evacuating the hospital? I go back to Lauren's side and finally hear the gong as well as nurses coming down the hall.

By the time they come in the room, she is done. The seizure probably lasted about 45 seconds but seemed like forever. There is no more helpless feeling in the world than seeing your child out of control. But that is what we are here for. I'm so glad. Work has begun.

Remind me again, why are we doing this?

Some of you may have gotten my original email, when we decided to pursue this course, so you know why we are doing this. Others, who are new to the blog or didn't get that original email may be wondering, in the words of the Talking Heads "how did I get here?".

Lauren has had a seizure disorder (Epilepsy), since she was 7 years old. At first they thought they were night tremors or sleep walking. An MRI showed a dysplasia (abnormal growth) on her brain, which we always assumed was the source of the seizures. They started her on anti-seizure medications which helped. As a growing child, it was necessary to increase her dosage regularly until it became ineffective or the side effects became intolerable. As a result we were changing medications on a regular basis. Some would last a year, others less. Eventually she ended up taking multiple medications. Tapering on and off of different meds, trying different combinations. At age 14 we readmitted her to CHoP where they redid the MRI (no change), weaned her off her meds and observed. To be honest, I am not sure what we achieved with that admission, but we were glad to have other neurologists take a look at her.

We were frustrated at that point as it seemed we were just throwing drugs at the problem to see what stuck. We had a second opinion in DC last summer and they confirmed that it was not endocrinology or metabolics and they recommended surgery. Back in Philadlephia, we pursued pre surgical testing including more neuro-psych testing, level 3 MRIs, MEG (MRI + EEG) and PET scans. None of them were conclusive, so the next option was to do an EEG directly on the brain.

And here we are, waiting for seizures. Same as it ever was.

PREP Talk

The Pediatric Regional Epilepsy Program (PREP) team (neurologists, neursurgeon, neuropsychologists, nurses, etc.) met today to discuss Lauren's case. As expected, the plan is to wait for seizures. As long as there is no bleeding, excessive pain, or infection, which would force them to remove the grids, they will wait.

Meanwhile, the Occupational Therapy and Child Life therapists are in on a regular basis to stimulate her with games and exercise. She sat up for 10 minutes, stood for 10 minutes and sat up for another 10 minutes. She has a basketball hoop in the room for free throws, and had a rousing game of UNO with one of the Occupational Therapists. Now they are playing charades.

Waiting...

for snow.

Left James at home tonight. He has a basketball game. When I came in after work, Sandra was there with a couple of our friends, and Lauren had a couple of her friends over too.

We left them to go to the White Dog, by the time we got back, Lauren's young friends were still there, as well as a bunch of Jessica's friends. It must be great to have so many sisters.

Anyway, Sandra and her friends have left and taken the high school girls home. The 20 something girls are in there now, bonding with Lauren. Me, I'm in the hall, updating the blog. Available, but not too close.

Avoiding infection and the NCAA basketball tournament

We spoke this morning to Dr. Brown. He noted that we are in a balancing act. We have to wait for seizures, but the longer we wait, the greater the risk of infection. We are in no danger now, so we will continue to wait.

Remember that on Sunday they told us that they spotted intercranial seizures and were able to pinpoint where they were? Well there were only three of them, they happened on Saturday, and they haven't happened since.

The MRI they showed us at the time was at the midpoint of the skull as you look down on it. Almost as if you cut off the top of the head, right above the ears, and looked down inside. Now imagine there were horizontal and vertical centerlines, an x-axis and a y-axis. The area they suspect the activity is coming from was just right of the y-axis centerline and halfway above the x-axis centerline.

Today he said that they suspect the seizures may be mirrored, or coming from both sides of the y-axis centerline. He said you can remove the problem on one side, but not both. When I asked if taking only one side would solve the problem, he said if frequently did. Of course we need to get more seizure readings to confirm all these suspicions.

Dr. Storm came in tonight. We asked if the grids may interfere with seizures. He said sometimes; he told us they have heard of kids going a year without seizures once inter-cranial grids were placed. Being the technical type, I think he was just sharing some of the extreme instances of this procedure. We certainly don't want to be here that long, and neither does he. He's going to Vegas for the NCAA basketball tournament on March 17th.

Quiet Night

After Sandra and James left around 9, Lauren & I read and surfed the internet until about 11:30.

Quiet night. Except for the occasional alarms (some false, some routine) from monitors or pumps we did well.

No seizures. I'm waiting for Sandra to relieve me so that I can go to work.

Bor-ring....

Sandra reports a very quiet day today. Had a consult with the neurologist, Dr. Brown. No real new information.

When I arrived after work, a friend was visiting. I brought a dinner that was pre-prepared by a friend and Sandra had ordered something from food services for James.

Jessica's good firend, Carley, who is a PICU nurse here stopped by with goodies and to visit before her shift.

Sandra's mom left a beer for me to enjoy after work.

James typed an essay on Ellen's I-Mac with the topic, "craziest excuse for not completing your homework". We suggested "because my sister has had brain surgery". He went for the "evil clown under the car theme". He typed in G-docs, then mysteriously lost it. I told him it always goes faster the second time around and suggested he go with the "lost while cloud computing theme". He wasn't amused.

Lauren is eating more now, just got her a large fry and orange Hi-C from McDonalds.

If all this sounds terribly routine and mundane, it is. Waiting for seizures.

Inter-Cranial Seizures and Playing Ball in the Room

We moved out of the PICU yesterday afternoon and saw a lot of visitors yesterday. We thought it might be overwhelming for Lauren as she was in pain and lethargic, but she said she liked the company.



Jess and Langley stayed with Lauren while Barbara, Sandra and I went for dinner at Mad Mex near the Penn Campus. Sandra spent the night with Lauren while the rest of us went home, had drinks and crashed.



Sandra said their night was quiet and restful. The IV team came in at some point and replaced Lauren's IV, which she said was bothering her, but otherwise it was a quiet night for them. This morning, Dr. Clancy, one of the attending neurologists came by with a smile on his face and good news for us. He showed Sandra a copy of the EEG reading, which looks like a lie-detector test pattern, and said that some extra squiggly lines in the middle of it represented inter-cranial seizures. Inter-cranial seizures are seizures that happen in the brain with no outside indicators like twitching or seizing. They are the beginning of seizure activity. He even showed us on a brain MRI where he thinks they are coming from and noted that there is nothing critical at that part of the brain. Hard to believe that there is any area of the brain that we could do without, but I suppose that if you did lose some functional part of your brain it might migrate to a lesser used area. Anyway, they are still going to wait for bigger seizures and more evidence, but this is a promising start. Good news for all of us and Lauren, a real morale booster.



I think around lunchtime, Lauren had alot of visitors, young and old alike. She loved "having her friends over", so the parents wisely evacuated the room to huddle elsewhere. Sandra said the kids (5 plus Lauren) were having fun and were quite loud, then the Occupational Therapist showed up and the 7 of them played ball in the room. What a time.



Lauren must be feeling better because within 5 minutes of me being there, she was yelling at me, telling me what to do, and basically being a 16 year old girl.



A couple of funny stories re the doctors.


One of them really likes our family and said he was setting up a martini bar in the lobby when he retires. Sandra confirmed that we liked martinis and would patronize his place but questioned whether all the parents would be fun with a couple of martinis under their belt.

Yesterday, Dr. Storm was visiting Lauren. There were a lot of visitors and activity and the nurse asked him if he was one of the neurologists. He said no, he was the neurosurgeon, and that was about the biggest insult you could give a neurosurgeon, calling him a neurologist. As I read this it doesn't seem funny, but the way it transpired showed that contrary to their reputation, these guys have personality and a sense of humor. Then when we were walking out and past the EEG machine, Sandra paused, pointed to the graph and asked if it meant something. Dr. Storm paused and laughed "not to me"!


Anyways, nice guys and we have a good relationship with them.


Breaking news: The physical therapist was by, checked Lauren's right leg and said that the function was fine. More good news.

Busy, Quiet, Sick, Helicopters

About 9 pm yesterday, Sandra, James, my sister Barbara, and the Borellis left and it was just Lauren and myself. They took us down for an MRI, which they say is standard after surgery. It was fairly routine and Lauren seems to tolerate them well (without sedation). It stinks though because she has to make 4 transfers, bed to stretcher, stretcher to machine and back. It does provide an opportunity to change her bed, but the moving around cannot be easy for her. At one point near the end, probably the loudest phase (I think they call it differential), her heart rate monitor went really high, like 220+. They stopped the machine and the nurse came in to check on her, the monitor returned to normal, Lauren said she was fine. I figured it must have been a false reading or something. They left the room again, waited a minute, didn't start the machine up again, then came in and said "all done". Go figure.

We got back into the room around 10-ish and the EEG team came up to connect all of her wiring. There are blank wires coming out of her incision with no leads or anything connected to them. The EEG team connects them to terminal blocks that are connected to these small portable terminals in 2 (left and right?) nylon cases about the size of a portable CD player. From there flat wires go into the EEG cart (these portable carts are named "the Carlos Ruiz", "Phillie Phanatic", "The Charlie Manuel", etc) CPU which has a video camera on it and a screen showing the EEG reading and video feed, all of which is digitally recorded. When Lauren has a seizure, we are supposed to hit a push button which marks the location of the seizure activity for future reference.

Anyway, no seizures last night. Pretty quiet. Lauren slept well, I tried but gave up and watched a movie till 3:30 am. A couple of helicopters came in overnight, we are in on the 7th floor just below the helipad, so it is loud. The worst thing about it is not the noise, just what they represent. Some kids life is in danger. Sad.

This morning was a little rocky. Headaches and nausea. They gave her some morphine and that settled her down. The nurse suggested that pain could be a source of her nausea. I anticipate we will move back to the neurology floor today. Sandra, Jess and Langley just arrived.

More helicopters this morning. Three in a row, reminded me of MASH.

Saw her x-ray

Saw an x-ray of her skull tonight. Looked like she was hunting with Dick Cheney.

In the PICU

Lauren is out of surgery and back in the PICU. She is on morphine and resting comfortably (at least she looks that way). The Neurosurgeon's said everything went well, the grids are in place, and she did not lose any blood. She does look pale though, but that is mostly due to the anesthesia.

In surgery now

She is in surgery now. Apparently this one will go more quickly than the first one, which makes sense. A lot of the hard work was done last time (shaving, incision, craniotomy). The preocedure should take about 1-1.5 hours, with another 1-1.5 hours for prep, anisthesia, etc.



I spoke to Dr. Storm briefly, he said that last time they slid the grid between the hemispheres (blind?) which may have allowed the left grid to turn into the left hemisphere, causing the issue with the leg. This time they will spread the hemispheres and place the grid interhemisperically and lay it over the top of the left hemisphere as originally planned. The said he will stay away from the motor center. Sounds like I know what I'm talking about, don't be fooled. Just repeating what I heard.

If you want to hear a fascinating talk about the brain (only 18 minutes) follow this link:

http://www.ted.com/talks/lang/eng/jill_bolte_taylor_s_powerful_stroke_of_insight.html


A neurologist discusses her stroke and how the brain works. It is posted on TED, one of my favorite websites with the tagline "Ideas Worth Spreading" in which brilliant people discuss important ideas with a time limit of 18 minutes. You've got to love editors. And on that note I'll sign off.

Back to Surgery

The Neurologist, Dr. Dlugos told us today that they want Lauren to go back to surgery tomorrow to place an inter-cranial grid over the left hemisphere of her brain. The Neurosurgeon, Dr. Storm, will do that tomorrow morning, about 9-10am.

Apparently, the whole PREP (Pediatric Regional Epilepsy Program) team has conferred and decided this is the best course to take. Lauren has been taken off of two of her three medications and today they started weaning her off the third (Dilantin). Tonight, she will not even get the Dilantin dose. So, off all meds.

For the surgery tomorrow, seizures will not be an issue as she will be unconscious and seizures do not happen in an unconscious state.

Unfortunately this means three surgeries instead of two, but I suppose if it assures the best outcome it will be worth the effort.

Poor Lauren. She is surely being tested. She certainly has been couragious. Sandra had not told her yet about the plan as it had not been confirmed by Dr. Storm, however, he showed up while Sandra was out of the room and spilled the beans! Never a dull moment in CHoP.

So, tomorrow we will be back in the PICU (Pediatric Intensive Care Unit) for 24 hours of post surgery stabilization, then back to Neurology. With both grids in place and the medications gone, we will be awaiting seizures and a treatment plan.

Crank up the prayer chains, your love, support and good vibes are greatly appreciated.

From emails to blog

I wonder how many people start their first blog with "Here it is, my first blog!"

"Here it is, my first blog!"...

My attempt at efficiency, the emails were getting out of control, Sandra had started a scrapbook, journal, whatever... any way, Lauren will be horrified.

Sandra went home, I stayed the night, Lauren and I read, she watched some TV, lights out at 10:30.

The nurse was in every hour, but otherwise, we slept well. 9 hours for me, she is still snoozing.

Poor kid is taking medication for her pain, which makes her sick, which leaves her hungry, she tries to eat, then gets sick, and on and on.

We are just biding time at this point. Waiting for seizures to begin. It was like this in DC during the summer when we went to get a second opinion. No activity at first, then light activity for a couple of days. We were ready to leave, then decided to stay one more night for something a little more definitive and boy did we get what we asked for... multiple grand mals.

So we wait.

Lauren has been great. A real trooper. Like I said on Facebook, Lauren is my superhero. I wonder if she knew what she was getting into if she would choose to do this again. I wonder if any of us would. Sandra is holding up well. We are both tired, she is so much better at dealing with visitors. I pace too much, she talks it through.

Jessica was here till yesterday noon. She hated having to return to DC. She has been great for Lauren also. I am hoping this will be a real sister bonding moment for them. James is in and out. He has school and we are trying to keep things as normal as possible for now. He was there the whole time in DC (not to mention the day to day), so he knows what is what. Despite their bickering, they are thick as thieves. I love to see their love for each other, which they themselves cannot yet fully understand.

OK, nothing else new to report. I am kind of nervous about posting this. Who will see it, how will it be judged, will Lauren ever forgive me? I guess everyone asks those questions too. Here goes...