Friday, February 1, 2013

Back to Training

Happy February!

We spent the rest of January quite sick! And by "we" I mostly mean me... But, we survived, and are all looking forward to the boys' birthdays and our anniversary. We're even going on our first EVER family vacation!! But, we'll talk about that as it comes. :)

As far as Renn is concerned, I wish with all my heart that I could say that the Clobazam worked and that we are celebrating 3 weeks seizure-free. But, Clobazam not only didn't work, it REALLY didn't work. The side effects were difficult, at first. Renn was apparently falling asleep in class, and was constantly saying that he was too tired to complete his tasks and work. Eventually he got used to it, and overcame the exhaustion, but his seizures continue, no matter what.

He is still having 1-3 seizures a day, with the occasional days filled with 4-5 seizures. He has begun to recognize when a seizure was about to happen, which is strange and awesome at the same time. He's said a few times that he's had seizures at school, but his teacher has never mentioned anything to me. Also, his seizures themselves are changing. He is now running/high stepping in various directions. That's hard for us to witness.

We've been waiting to hear from Dr. Amazing on the next course of action, and she's been waiting for the full results from the MEG. She's been checking in with us regularly... Constantly asking how he's doing. But today, she finally got back to me. And here is what her email said:

"How's he doing? The MEG wasn't very helpful – didn't identify a spike focus, but there was only one really good discharge because most of his discharges occur during sleep. So we might have to bring him back for a sleep deprived or even a sedated MEG to get better data. I'd also like to get a PET scan which can help us in thinking about whether he has a focal area of his brain in which the seizures are coming.
Let me know how's doing…"

My reply was difficult to make, seeing as I really didn't see this coming. And I mean, I really didn't. I assumed that, well, Renn was done. What we were doing was it, and he was going to be doing this the rest of his life, and he'd be Renn... just the way he is. But I asked if we could do the MEG and the PET scan during the same visit, and if he'd have to stay the night again (that thought brought me to tears, seeing as he's told me every day since we've been home that he didn't want to sleep at the hospital EVER again). Her response?

"...In terms of the MEG and PET, we'd have to do them on separate visits, and I think I'd go for the PET first. So let's see how the Vimpat goes, and then we'll arrange the PET scan and clinic visit the same day.

Keep me updated….hi to Renn."
Oh yeah, did I forget to mention that we are starting him on ANOTHER medication? This one is called Vimpat, and it is intended for focal seizures... something we still aren't sure he has. And I'm VERY scared that this one will make him worse, just like Trileptal did, since they are similar medications.
So, back to UCSF we go. Not sure when, but we'll be going back. Yeah.

I promise to post about just what, exactly, the PET scan is, what the MEG is, and why Dr. Amazing is going forward with these tests. I'll get super scientific and everything! But for now, I'm going to pick my Jedi from school, and enjoy the weekend with him.


  1. HUGS HUGS and MORE HUGS!!!!
    Stay strong. God is walking with you and Renn and the rest of your boys! :0) Hubby included there.
    PM me if you need to vent, cry, worry, whatever!!!
    Love to my favorite Jedi!!!

  2. You can't do the PET scan here?

  3. Man, o man! Sending you all big hugs!

  4. Oh, Bethany. What a difficult journey you're on. My heart is with you. I so hope they can find a way to help our Jedi, and make all these tests worthwhile. A million more hugs.

  5. Onward is the right word with which to end this post. That is the only way to go. Onward to the next step. Onward to the next test. Onward to a solution. Onward.

  6. Oh, my. More challenges. I'm so sorry things aren't improving as you hoped. But maybe the new tests will discover something helpful. Is there anything we can do to help? To make the hospital visit a little easier for Renn and for you? Meanwhile, have a wonderful fun weekend with your Jedi and know that you're both in my thoughts and prayers.

  7. Good luck Renn! (thinking up a new movie!)

  8. Definitely onward. We keep praying for Renn and for you all to get through it all. Onward, ever onward. Stay positive. :)

  9. Oh Bethany, sorry to hear he has to go back. I'm praying for you guys.