Overtime with the Seizure Monster



I found this lovely gem of encouragement the night before our appointment with Dr. Neurosurgeon. Those of you that know me the best, KNOW this slapped me right in the face. I was so thankful to have read it, and to read it again tonight for reassurance.

 

Tuesday (2/21) we were scheduled to meet with Dr. Neurosurgeon at 12:30. We got there a little early as we usually do since we commute over an hour to get there, and we never really know what the traffic will be like. We checked in and found out the wait was going to be about an hour and a half. Uggghhhh, just what people with major anxiety enjoy doing most...waiting.

We killed the time by feeding C-Monkey some lunch, playing on our cell phones, C-monkey played with his toys, people watching, and me surfing around on my "happy place" ~Pinterest.



LOL! Those of you on Pinterest know this is true!



We FINALLY got back in the room, and waited some MORE!! Why didn't we pack a picnic and sleeping bags? We finally saw Dr. Neurosurgeon at 3:00. We were so anxious to hear what he had to say that we didn't flip out over the wait.

Once he opened his mouth, I knew we weren't leaving there with what I thought we would be...a solid plan. Long story short, they really did not get any concrete evidence on Monday's MRI that swayed their thinking and compelled them to commit to surgery. I scanned in a couple of the images from the MRI, and I see the dysplasia. I don't know if it is just because I know what we are looking for. I'm going to do a little experiment and see if other people that DON'T know what they are looking for notice it. I will post the unmarked pics below, and the marked pics at the very end of the post. Let me know if you were able to see the area or not.



Do you see what I see???



Where's seizure monster??

  

They had already planned on presenting him in conference which was supposed to be tomorrow, but the chief of Pediatric Neurology, who has oodles of experience, is out of the country, and I could sense Dr. Neurosurgeon really did not want to conference without him. Me being the modern smart ass that I am asked, "Well, can't you just skype him in?" Duh?? Not likely that will happen so they will conference next Friday instead, & the 10 Doctors on the team (peds & adults) will really scour ALL of the information that they have. So fingers crossed we will hear something next Friday! Actually Dr. Neurosurgeon guaranteed us we will!

We got some "what if" scenarios from the surgeon so that was eye opening. He personally does not feel like a corpus callosotomy would be the most benefit to C-monkey. He believes our next best step, if the team agrees to move forward, would be to place subdural electrode strips on C-monkey's brain via 4 burr holes in his skull. He said he would be in the hospital connected to those for maybe a week. Our hope would be to get the most precise information on whether or not we are battling the right temporal or right frontal sections. We would then decide what surgical course would be the most appropriate. We were disappointed to say the least that once again, things are not clear cut. I'm just trying to think of it as we are in overtime in our match against the seizure monster.

The one great thing from today's appointment, was that I think Dr. Neurosurgeon really got a glimpse of how urgent it is that we do not drag our heels in this.

We have to make decisions.

We have to make the best decisions for C-monkey.

To pull him out of the grips of the seizure monster...but we have to do it quickly!

So we re-energize and prepare to keep fighting the greatest fight of our lives.

We just want to be in the last seconds of the match with our feet pinning the seizure monster to the ground when the buzzer sounds. It is just going to take a little longer than expected.

"Everything always works out somehow. It just does. Be at peace..."

Did you guess right?

2 days....

Tomorrow is a big day for us. An especially big day for C-Monkey. A day that I didn't need to be dealing with snow & ice, which is what we have outside (school has also been cancelled for tomorrow since I started this post)! I needed warm air & sunny skies. Something to lift my spirits. Anything to help me not think about everything I've been thinking about for the past month.

We got the call about a month ago that February 20th was the earliest that C-Monkey could get in for his next step in the process.... a 3T MRI with  Diffusion Tensor Imaging. Don't worry, I had to look it up too. Sadly, a lot of it was so technical that I still didn't have a FULL grasp of what it was. The gist of what Dr. Neuro had told us was that it is a more in depth MRI with finer slices, so that we could get a better picture of where the Cortical dysplasia is and what was surrounding it.

Well, me being me, that wasn't good enough as I've been mentally preparing for tomorrow. So here is what I was able to piece together. This is what the 3T part stands for:

"Magnetic Field Strength is one of the key dynamics that contributes to production of higher quality images, thinner slice thickness and potentially earlier detection of pathology.

Magnetic field strength is measured in “Tesla” units. A “Tesla” (1T) is equal to 20,000 times the pull of Earth’s magnetic field. Therefore, the 3T MRI scanner is 60,000 times stronger than the pull of Earth’s magnetic field. Relative to diagnostic imaging machines, the 3T MRI scanner has a magnetic field strength ten times more powerful than strength of most Open Architecture MRI scanners in use today, in turn providing much higher quality imaging. {Note to self: leave all of your metal junk at home!}

This is an example of a MRI with DTI. Some of the pics I've looked at today remind me a little bit of a Light Brite toy...lol! 

The DTI stands for Diffusion Tensor Imaging. The easy-ish version of what it is used for is:

"DTI is becoming increasingly important in the preoperative assessment of patients... Relationship of the mass with important white matter tracts can be demonstrated, and thus assist the surgeon in preserving function, while maximising lesion resection." For those of you that want to challenge your brains a little further, you may read up here. 

Up until Thursday we figured we would have this done, & then keep treading in the abyss of the unknown until the team could review it & "discuss". I just think it is so bizarre how this team meets & discusses C-monkey, yet they are missing 2 of the most important team members: J & I. We are the ones that have lived through every single moment of this journey. We are the ones (along with C-monkey) whose life will be forever changed by any decision that is made. We are the ones that have the MOST at stake, and yet we aren't included in the discussion. How does that make sense??

I called Dr. Neuro's office last Monday (2/13) as I was leaving work, & left a voicemail with his RN. I have had countless problems with this person not returning calls, or taking forever to return a call. I should have known better. I stated that I had some questions about the MRI, some concerns about his seizures getting worse (he's having them in his sleep now), and I wanted to go ahead & get Dr. Neuro to get us in with Dr. Neurosurgeon so that we didn't have to wait another month to get in with him. All of those sound reasonable, right?

Monday passed without a call. I was annoyed, but okay with it.

Tuesday came & went...no call. Getting even more annoyed. Actually, pissed is more like it.

Wednesday morning came, and I told J that if I hadn't heard anything by the time I got home that afternoon, I was contacting Dr. Neurosurgeon MYSELF. Of course.....no calls! My anger was at a Code Orange at this point! I proceeded to email him, explained the situation, and pleaded to see him as soon as possible (& I made certain to mention that I had called Dr. Neuro on Monday and still hadn't heard anything). I heard from him at 11:40pm in a very empathetic email stating he could see us Tuesday. I went to bed relieved that my persistence & advocacy for C-monkey had paid off, and that SOMEONE believed my child was as important as I do! He scored major points with me in just a quick email.

I emailed him back the next morning thanking him profusely, and accepting his offer to meet with us on Tuesday. I heard back from his secretary in less than 30 minutes with an appointment time. Another bonus point! Maybe my "signs" are starting to pop up?

Oh for those that are wondering....I heard back from Dr. Neuro's RN on FRIDAY, stating that he wanted to look at the MRI and then refer us to Dr. Neurosurgeon. I had steam coming from my ears! She then fed me a bunch of lies on why it took from Monday to Friday to call me back. My anger surpassed a code RED. I gave her a verbal lashing that left me shaking. I was pleased to tell her the facts on how professionals should respond to their patients, and that we would be meeting with Dr. Neurosurgeon on Tuesday! I bet she really won't ever call me back now.

I normally try not to lash out like that, but with the amount of stress we are under, and just the sheer fact that she obviously could give a rat's butt about my kid...it was just too much. It seems to be a common problem in the medical field.  I don't know if it is because hubby & I are both medical professionals so we "know better", but it seems that almost everywhere we go, there is such a lack of compassion from the professionals we encounter. I would really like to devote a blog post to this later.

So, we have a very stressful & busy 2 days planned. Hopefully by the time we leave from our appointment on Tuesday, we will know which direction we are headed with our notebook of questions answered. We would greatly appreciate prayers, happy thoughts, positive energy, and strength for the road ahead. I also want to thank all of you that have mentioned how much you've been touched by our blog either in the comments, FB messages, or in person. I haven't gotten to respond to all of them yet, but know that I appreciate the encouragement, and I promise I will keep on being real. I feel that I have to for the parents out there that feel like they are alone in their thoughts and fears, and for the people that don't realize what all our life entails, and how much it impacts those of us that live it daily.



Our chance to slay the beast?

"Sometimes all you can do is

not think

not wonder

not imagine

not obsess.

Just breathe, and have faith that it will all work out for the best."

I found that the other day on Facebook, on one of the pages that I follow. It's strange how some days I will read or hear things that literally yank my attention. I feel like I've been walking around in such a fog lately that maybe that is the only way to get my attention.

It's almost like I need huge neon signs screaming for me to pay attention. When life gets SO OVERWHELMING & too much to deal with, I escape into this mental shell where it is just me fighting these huge life issues (& often fighting myself). I get the essentials of daily life done, but it's almost like I'm just shuffling along on autopilot going from point A to Point B. Just getting through the day.

I don't like making big decisions. Never have & never will. The hubby & i were planning a date night & 3 days later I still hadn't figured out what we were doing. Heck, I can barely get myself dressed every morning because I'm so indecisive.

The decision J & I are facing right now is most likely the biggest decision we will EVER make in our lives. It keeps me up at night. It follows me everywhere I go. It is a topic of conversation for everyone that already knows what we are facing. It puts butterflies in my stomach. It makes my hands shake & chest hurt from anxiety. It makes me cry at the slightest thing...every day.

What is that decision??

To answer that, we have to go back a couple of months. In a previous post I had mentioned how C-monkey was admitted to the hospital back in October for a video EEG to evaluate the new laughing seizures. We waited (very impatiently) for the Dr to meet with the whole Epilepsy team to discuss C monkey's case. When he finally called to discuss the results it was a whole 5 weeks later. Pissed would be an understatement at that point. He proceeded to tell me on the phone that Friday (as I'm heading into work, no less) that C monkey's seizures finally had a right sided focus (where the seizure is originating from one point instead of "all over"). He & the team recommended a PET scan and Ictal/Interictal SPECT scans to further evaluate what they were seeing. We found out the next week that C monkey would be admitted to the hospital around the middle of December for the SPECT scans, & we would go back on 12/29 for the PET.

December came, and we had all of the testing done during the craziness of Christmas, etc. The hospital stay was well, a hospital stay. We had a follow up appointment scheduled for January with Dr. Neuro. We hoped that all of the testing would be looked at and discussed and we would leave with a plan in place.

We forgot that C monkey is NOT a "rule follower". This is the kid that stumps most Doctors and throws the rule book in the air when it comes to clear cut answers. All of the imaging tests showed that he has a cortical dysplasia. We knew back in 2009 from a MRI & PET scan that he had this. The problem was, his seizures & EEG weren't consistent with where the dysplasia is located. So surgery was not an option. The current problem is that the tests do not all reflect the same location. (WTF is right)

Here is how C-monkey's dysplasia breaks down according to each test:
MRI (2009): right frontal
PET (2009, 2011): right frontal
SPECT (2011): right temporal
EEGs suggest widespread seizure activity, but predominantly right temporal
For those of you fortunate enough to not know the sections of the brain, here is a great
diagram of the brain to put it into perspective for you.

The image below is an example of what Cortical dysplasia looks like.  It is the little whitish blob in the upper left of the picture. This is very similar to C-monkey's. I wish I had the sense to take a pic of it with my phone when his Dr had it on the screen, but I didn't.

borrowed from blog, "Neuroradiology on the Net" & ACR

At least they are all showing up right sided, but the odds would be more in our favor if they were ALL either frontal or temporal. Dr. Neuro explained that this can happen because all of the tests look at things differently.

So, what is the big decision and how does all of this gibberish play into it? Right now, according to Dr. Neuro & the rest of the Epilepsy team our best treatment option is:

 brain surgery. 

That's right, to help our son hopefully live some kind of better life, we have to make the decision to let go of our precious little guy into the hands of a surgeon who will saw into his skull, and proceed to cut into his brain or cut out parts of his brain.

Kind of makes dinner decisions look rather minuscule, huh?

There are varying approaches we can take with it, and I rather post those once we have more solid information. We will be doing another MRI in about a week, & hopefully meet with the neurosurgeon after that.

It's been A LOT on J & I. This decision is weighing heavily on every aspect of us. We are scared about making this decision. So many what ifs. So many very scary what ifs. So many details to figure out. So many unknowns. I'm a planner. I don't do well with a lot of unknowns.

We feel we need to act quickly on this too. We feel like we are in a race with the seizure monster over control. Who is going to win? C monkey's seizures are getting worse. They are lasting longer. Coming on stronger. Harder to snap out of. Draining the daylights out of all of us.

The worst part of it all? They have stolen his real laughter.

We've noticed that this week, and it has been so heartbreaking. Those of you that have met him, you know what an adorable laugh he has. We've tried all of the usual gimmicks that always made him giggle uncontrollably.

Nothing.

Silence.

He isn't making any kind of sounds anymore. Only when the damn seizure monster attacks, & he laughs/cries with that. We have to find a way to trip that monster in this race.

To not let him win.

For us to win, we have to make the biggest & scariest decision of our lives.

He's our STAR every day

Last Friday, C Monkey was honored during his school's "Star Student" ceremony. He was named the Star Student in his class for October.

C-Monkey & his teacher accepting his certificate & medal.

We always celebrate every accomplishment or award he receives like a huge deal. To us every. little. thing. he does is a HUGE deal! When you have a child with Special Needs, you don't take much for granted. You learn to celebrate things that most parents would consider an every day occurrence. When a Doctor looks you in the face and tells you that your 8 month old wouldn't ever walk or talk or do much of anything "normal"....you are thankful for what ever you can get. When you are given the worst case scenario, and your child gives the Dr's expectations or predictions the middle finger by pressing forward against the "expected"...that is worthy of celebration!



J & C-Monkey

So, every time C-monkey receives recognition either at school, a baseball game or anywhere: we are always there cheering the loudest and taking the most pictures. We can't let moments like this pass us by. We've all worked hard to get him where he is. In a way those celebrations are an acknowledgment of our work & our devotion to C-Monkey too. The fact that he doesn't give up & we don't either. 



Proud Mommy & C-Monkey



I reflected really hard on this year's Star Student honor. I really know what a struggle everyday tasks are for him. What an internal war is going on in that brain of his. Why we fight so hard to save him from the seizure monster.

The image below is what a "normal" EEG looks like:

The image below is what C-Monkey's EEG looks like AT REST, when he is NOT having a seizure.

Kind of reminds you of the charts that are used to demonstrate an earthquake's pattern doesn't it? The sheer fact that C-Monkey's brain has such a chaotic rhythm to it amazes me that he can learn anything...even slowly. I can understand why he is so cognitively delayed. How can anyone learn when this is happening every minute in your brain? Add in atleast 20 seizures a day....whoa. I only wish I could feel what it feels like to be him for a day. To help me learn how to help him. To save him from this firestorm that is happening in his brain 24 hours a day.

By the way, that EEG was performed in October.....the same month C-Monkey was chosen as a *STAR STUDENT*.

C-Monkey: 1  Seizure monster: 0

Star Student, how about Star Kid? Or just plain ol' ROCKSTAR.