Friday, April 26, 2013

The Differences in a Month: An Update

My goodness, it has been a while. I apologize to those who have been asking questions about any updates. We, as a family, have been incredibly busy!

I must mention though, that we had Purple Day! It was such a fun day!!

We have many pictures, but these were my three favorites. This was before the festivities began! We had a great turnout, and Renn was incredibly encouraged about being celebrated for having Epilepsy. He had been quite irritated, until that point, so it was a blessing to see him run, laugh, and play.

So update time... Let's go back to the last Unveiling the Sith post where we discussed the "game changer" as far as meds go. Prednisone (the steroid he was put on) was, in theory, going to jump start Renn's brain the way one would jump start a dead battery on a car. It was going to be two weeks of stress, irritation, and immense hunger for our little Jedi, with an additional two-week taper.

In that time, we also had to say goodbye to Dr. Amazing.

This was NOT easy for me.

So with the new doctor on board (we shall call him Dr. Genius), Renn started the steroid. His first day? No seizures! We were anxious, but had some hope. Second day? NO SEIZURES!! Okay, okay... breathe. But on the third day, he had not one, not two, but three seizures. The hubs was still hopeful and bubbled encouragement all over the place; but me? Nope. I knew this was another dud. And after one week, Dr. Genius agreed and we took Renn off the steroid with that same two-week taper.

Prednisone did do something interesting, however. It caused us to purchase locks for our refrigerator  and pantry. Our little boy, in three weeks time, gained NINE pounds! I caught him eating at 2:00am two nights in a row, he drank a gallon of milk ALL BY HIMSELF, in FOUR days! And not that we weren't watching carefully, mind you. He was just hungry all the time!


So where are we now? Well, Renn has had no medication whatsoever in the last three weeks. It's been a strange adjustment. The hubs and I considered that maybe his seizures would stop altogether once there was no medication (okay, we begged God for that), but no. They have dropped in number, however. And this last week when he had a pretty high fever, he had none! Coincidence? Yep. This morning proved that.

Anyway, Renn's PET scan came back with an "abnormality" on his right temporal lobe (and if the word "abnormality" is as confusing and unsettling to you as it is to us, join the club), so Dr. Genius was reluctantly convinced that Renn would be going through surgery this Summer. But just to be sure, (since we were in the throws of scheduling all the pre-surgical consultations and such) Dr. Genius and his associates took Renn's case and presented it at a Pediatric Epilepsy Surgery conference, yesterday. I mean, wow! Renn is probably going to be the subject of a research paper. THAT is what I mean when I say his situation is nothing but odd.

Dr. Genius called me immediately after the conference was over...



Renn's seizures don't make sense. That's the bottom line. And no doctor can seem to isolate just what is happening. Everyone has their own opinions, of course. But there isn't enough concrete evidence to help anyone make a serious decision on just what to do. We did get one guarantee, though: Renn's seizures are 100% focal. Praise. GOD.

So, we are now going to be taking our sweet Jedi back to UCSF for a stronger MRI that will focus on that "abnormality". If they see what they want to see, then we get to go home. If not? He gets admitted for something called Single-photon emission computed tomography (SPECT), which shows a map of blood flow through different parts of the brain. So, he will be monitored like a regular Video EEG (like all the ones we've done before), but this time he will have an IV as well. When he has a seizure, we will be injecting him with an isotope that will hopefully follow the blood flow to his brain and show the precise epicenter, if you will, of the seizure. The issue is, once the isotope is made we only have a four hour window for him to have a seizure. If he doesn't? We're basically done for.

If we get a seizure and are able to inject the isotope, Renn will immediately be sedated, and we will rush him to some other machine to take a closer look.

This visit is going to be HARD.

So, here we go again... I'm hoping that Renn can finish Kindergarten without dealing with another hospital stay, but chances are, that won't happen.

You're officially up to date... Peace, blessings, and love to you all!


  1. Sad, scary, but at least there are ideas and a Plan B (and C and D and...) Prayers and happy thoughts will continue to come your way. Hang in there. xo

  2. Oh, Bethany -- what you have been through, and continue to go through, tears at my heart! My love, prayers and positive thoughts are with you, as always.

  3. Hugs and prayers, Bethany. I can't imagine how hard this is.

  4. Can't believe you are going through this all again. As Genevieve says, at least there is plan B, D and .... in place. Thinking of you all, sending *hugs*

  5. My thoughts and prayers are with you guys.