Well we weren't coming down here looking for a unicorn.
We prayed for clarity and answers and understanding and that is what we are getting. No one said the truth was easy. This trip to Houston supports whatever jaded person said that in the first place.
Nutshell of the EMU findings:
Luke has a tuber on his right parietal lobe. This, Dr. Seto believes, is where the seizures are coming from. When kids are little, like Luke, it is much harder to tell where the seizures start on an EEG because they move and spread in split seconds. So they may be showing in a different part of the brain by the time the epileptologist starts to read the EEG. This is why it was so important that I didn't leave Luke's side the entire EMU stay. I had to yell into the speaker system the second I saw it beginning and then when I felt like it was over. During the seizure, I had to explain every little thing I saw, "Eyes deviating to the right... Left toes still twitching... Head drop... Arms and legs completely rigid" They had a video to monitor, but I made sure to add all the subtleties which somehow helped this genius woman. Who would have known, me just running my mouth finally made a situation better, not worse. Only took me 32 years.
As she inched closer to feeling like she had something, she decided to add 20 probes to make a total of 50 probes on his head. This gave her the data to say, without a doubt, where the big seizures were coming from.
Within 12 hours, she came in and told Luke he was an overachiever. He was even so thoughtful to stay up both nights seizing so we didn't waste time with silly things like sleep. She had captured 17 seizures in his 45 hour EMU stay.
We did leave with more news than we bargained for. We left with the news of Luke's background brain reading, which again is another fight and, yet, another component of TS. If you aren't up to date on blogs, it was basically his development and regression on a piece of paper. It showed us what Luke's brain looks like when it is NOT seizing. Its scary and it really makes me sad... It makes me sad for him, but, really, if I am being honest, I am sad for me, too.
BUT what did we come here looking for?
Why is Luke regressing? Is it because I have dropped the ball somewhere? Did we take him off a critical medicine? Should we have tried something else?
Answer. No, His brain is battling itself. Our weapons of therapy and medications were pitiful compared to the warfare it was bringing on itself. Came for answers and we got 'em. Now we can work on the next step.. after we eliminate the other battle. Seizures.
AAAANNNDDD we got that answer, too.
The real answers we were looking for...Where are the seizures coming from?
Answers. Got 'em.
Dr. Seto says, right parietal lobe. So we have one piece of the puzzle. Now we see if CT, PET, MEG, MRI, and functional MRI all say the same thing.
The hope is that all data points lead us to that same tuber. Start chanting "Right Parietal Lobe" now and continue until Wednesday evening, thanks.
CT scan took under 15 minutes to check-in, fill out paperwork, name get called, get strapped down, images taken, and back out to waiting room. I have waited longer for a Pumpkin Spice. Both worth well more than 15 minutes.
After scan, we met with Dr. Curry. First, let me say that he is an IU grad and I didn't know until just now. I am kicking myself. Obviously if he would have made the connection of a fellow Hoosier, we could have been bumped up the list a little bit. I have so many new IU hoodies I could have used...Clawing my way to the top.
Everyday I'm hustlin'.
Luckily by the time we met with him, he already had access to Luke's scan. Within 2 minutes of meeting, he pulled up the scan and gave us an answer. Right parietal lobe. YES. Right parietal for the win! A clear tuber to remove. But wait... No one said answers and clarity make the truth easier to swallow.
The doctor asked us if Luke was having any issues with his left hand...
Yes. He has lost almost all use of it.... Why do you ask?
The tuber is EITHER sitting right on Luke's motor strip for his left side so seizures starting in this region OR (and more likely, he says) seizures are happening very close to his region of the brain and the area around the tuber, this motor strip for his left hand, is in a permanent 'postictal state'. Have you ever heard of people getting very sleepy after a seizure? This is because their brains are beat from the trauma, postictal. Dr. Curry believes that is one possibility as to why Luke has lost motor skills on left side. That part of the brain has been so flooded with seizures through the years, it is in a constant state of 'worn the heck out'.
Why does this matter? I mean, I know it is important, it is Luke's brain and hand for goodness sake, but why am I adding this to update?
If the first hypothesis is correct, the tuber is sitting on Luke's motor strip, taking it out can cause paralysis.
Answers, not unicorns.
Ok, ready to turn the corner? The second hypothesis is actually more likely based on what he saw in the scans. The other imaging Wednesday will tell us much more, but as unadorable as this post is, I feel like when doctors start throwing out words like 'paralysis', it is news to share. Its real and hard and complex. But these are all words that the doctors not only used for TS in general, but specifically for Luke's case. He is an overachiever. Remember?
We came for answers and that is what we are getting. I didn't ask for a puppy (dealing with enough poop already) or the lottery (good lookin' out Humana Insurance) or a Porsche (need to fit the wheelchair and two car seats).
I came for answers.
The answers made sense which leads to understanding.And understanding leads to peace.
I am not going to lie. There were a few stops along the way. But I am going to give myself a "W" for the quick turn around in emotions.
Answers. Understanding. Peace.
I got what I need. We got what we asked for. I don't need no stinkin' unicorns.
Mother of two amazing little boys, one who just happens to be a TS warrior.