Tuesday, March 12, 2013

"Do Or Do Not... There is No Try"


It's one of our favorite quotes by Master Yoda, and it is one that just so happens to be the most relevant quote for our family right now. And that has never been more true, until today.

Our little Jedi slept through the night like a champ, and we started our day with the usual... Pancakes, bacon, Eggs, and 10,000 medical staff members coming in and asking the same questions (UCSF is, after all, a University with many, many students!). Soon, Renn was elbow deep in addition, subtraction, short vowels, and journaling about his day. We worked until lunchtime, virtually getting his week's worth of independent study done all at once, and then Dr. Amazing came in.

We discussed how Renn's seizures are just... strange. He isn't getting any better, and because we are noticing some slight behavioral changes, she told me of her new plan. To be honest, I wasn't at all prepared for what she was about to say, although I knew that there wasn't a medication left that could help our kiddo. So she explained to me that she would like to put Renn on steroids, with the idea that they might help to "Reboot" his brain. From what she's/we've seen, there's nothing showing up that gives a clear "HEY!! IT'S ME! I'M THE REASON HE'S HAVING SEIZURES!!" insight. Instead, she's/we're seeing lots of activity on the right side of the brain, but many times the activity is on both sides. She's thinking that it could be as simple as putting jumper cables on a battery in a car, and in two weeks, ZAP! Renn is seizure free.

The side effects of the steroids are what have me pacing the floor...

1. He will become wildly hyperactive. To use her words, "Totally bonkers."
2. He will be super irritable.
3. He won't sleep much.
4. Quick to be angry.
5. Major appetite, resulting in a lot of weight gain.

Now, why on earth would we agree to such a thing? Here's why...

1. We will only be doing this for two weeks, with an additional two-week taper time.
2. In that two weeks, all seizures could stop. FOREVER.
3. If seizures stop, then there will be no surgery or medications.
4. If the seizures don't stop, then this was only a two-week change.
5. "Do or do not... there is no try." We've committed to stopping at nothing to help Renn.

So, we are clearly both terrified and elated at the idea that this really could be it. There are so many good reports about going this route, so we feel quite positive about it. But the downsides are pretty harsh, so it's a difficult situation to process.

Dr. Amazing also informed me that she will be sticking strictly to In-Patient care, starting July 1st. Yep. She'll no longer be Renn's #1 doctor. However, she is leaving us in the hands of another doctor (his name TBD after I've talked with him more) whom I met a little bit ago. He is VERY nice, and seems to know more than she did! Come to find out, he's not just a Neurologist... He's also THE Pediatric NeuroSURGEON, here. So, I felt comfortable immediately.

Lots of changes... We are also taking Renn off of Clobazam, as it did nothing for him, either. Essentially, if the steroids work, Renn will be medication free in one month. I can't even fathom.

Tomorrow he goes in for his PET Scan (for more information on what that is, and why it is used, please click HERE). It sounds strange to say, but we are hoping/praying for an ABNORMAL result. If we get that, we will know exactly where to go and what to do with our sweet Jedi's brain. Surgery will most likely be in the works, but it will be an obvious solution. If the results are completely normal (and I will use the new doctor's words, here), "Well, Renn will become quite the research paper, and a whole lot of doctors will be curious about him."

All in all, there is no trying when it comes to Epilepsy. Yes, you try different things, but ultimately you must DO them, in order to know precisely what direction to follow. We have yet to only "sort of" give Renn the care he needs and deserves. No matter the cost, sacrifice, challenge, or amount of tears, there just is no trying.

Ironic that Master Yoda had set the motto for us, a long, long time ago...



 
Pray that tomorrow, March 13, 2013, is the day they find where Renn's seizures are coming from. Thank you. :)
 
 


9 comments:

  1. Your are all in our thoughts :~D
    May the knowledge of Dr. New coupled with the PET scan give the answers that will take Renn down the path to being seizure free.

    {{{Feel the hugs, Bethany}}}

    XOXOXO

    Lori

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  2. Good luck! I'll be thinking of you and praying for you!

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  3. Prayers and happy thoughts coming your way, as always. Finding the issue, doing the steroids - whatever works. And SOMETHING WILL work! xo

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  4. Sending you so much love, and hopes and prayers that the doctors and their team will get to the root of this, and find a way to help our Jedi. Oh gosh, you have no idea of the number of hugs you'd be getting if we all weren't so far away.

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  5. So today is the day huh?! I hope they get what they need, I'll be sending prayers all day.

    Oh and I agree, Erik's video is awesome! :)

    Good luck today!

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  6. My thoughts and prayers are with you guys!

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