Friday, October 24, 2014

Results from the Video EEG Monitoring - a new game plan!

I always joke, the best way to cure seizures is to leave the damn EEG leads on the child full time!  So, here we are, Day 5 and no seizure activity.  The EEG leads are finally off.  We did not capture a tonic clonic or tonic seizure, but we have obtained a lot of information, and we have a new plan.

On Thursday, we met with Dr. Tran and her team to discuss what she's observed so far, and her recommended plan.  Turns out, Jenelle has constant "electric neurological interference" (my term, and Dr. Tran agreed it was a great description for what is going on in her brain.) What is that you ask?  Well, maybe photos will help...

The photo below is of the EEG wave patterns we observed all day, every day when Jenelle was hooked up to the EEG.  We've always seen this type of "chaotic" pattern when Jenelle has had an EEG, and just assumed it was indicating her movements, etc.  We learned that this chaotic pattern is not because of movement, but it is actually electronic transmissions misfiring and disrupting constant brain wave thoughts.  The chaotic waves inside the red boxes I applied to the photo below are not what a normal EEG should look like.  

The lines in the green box below is what a "normal" EEG should look like.  Small, calm squiggly lines on every lead going across the page.  If the EEG were hooked up to you or me, it would have pages and pages of clean, small, calm lines.  Jenelle's EEG for the last 5 days had pages and pages of chaotic lines like the photo in the red box.  Constant electronic neurologic interference typical for a child with a diagnosis of Lennox Gastaut.  Imagine trying to function when your brain is constantly interrupted like that - frankly I'm amazed at how well she adapts and functions given what her EEG looks like all the time.

So, although we didn't catch a big seizure like a grand mal (tonic clonic) or tonic seizure, we have a better idea of what Jenelle's brain is doing.  Dr. Tran has decided to make some big changes in Jenelle's medications to see if we can "clean up" the EEG to get it to look more calm like the lines in the green box above.  We have discontinued Vimpat, and we are returning to a drug Jenelle had been on for almost 6 years - Felbamate.  We are also going to decrease the Onfi during the day as it makes her more drowsy.  

Since stopping the Vimpat on Wednesday, Jenelle does seem more alert!  Even Nurse Sue at UCLA felt Jenelle was too drugged when we considered the VNS a year ago; so its nice to see her more awake off the Vimpat.  Brett says to be careful what you wish for... Unfortunately, Jenelle has been waking in the middle of the night, every single night since staying here.  Brett and I have been wondering if she has had a habit of waking at night, or if this is a fluke because of the hospital environment?  I think I may look into getting a video baby monitor so we can keep a better eye on her.  Insomnia is something that can happen with Felbamate, and sleep deprivation can increase seizures, so looks like we may have some restless nights ahead.

Another thing we learned is that the seizures we thought were Absence seizures are not true Absence seizures.  Sometimes, Jenelle "checks out" as she waits for some of the electronic interference to clear up... her outward appearance when that happens looks like an Absence seizure, but isn't.  Tricky isn't it? The fluke grand mals, tonic seizures are just that... random break through seizures that should be treated separately, and with Diastat if they go over 5 minutes.  If the atypical Absence seizures begin to interfere with Jenelle's function (i.e. excessive drooling, inability to walk, sit up, etc.) we should continue to monitor those and treat with Diastat if they go on for over 15 minutes of an hour, which is no different that what we've been doing all along!

We get to go home today after our last dose of Felbamate at 3:00 pm.  Dr. Tran will monitor Jenelle's blood counts weekly for the next six weeks.  One of the major side effects that can happen in the early stages of beginning Felbamate is aplastic anemia.  Even though Jenelle used to take is without this side effect, we will still add it back with caution.  Our next follow up with Dr. Tran will be in January.  If things improve, we may have another overnight EEG to see if the waves are cleaner!

That is all for now!  Lots of wonderful information!  Thank you for the prayer - as always, I'll keep you posted!

Wednesday, October 22, 2014

Happy 12th Birthday Jenelle!

Jenelle spent her 12th Birthday at CHOC, and the Child Life Staff made her birthday extra special!

The family will celebrate Jenelle's birthday on Sunday with dinner and cake!  One more year till we have all teenagers in the house!  What a blessing!

Tuesday, October 21, 2014

Video EEG Monitoring at CHOC

Yesterday, Jenelle and I checked into our new home for a few days at Children's Hospital Orange County (CHOC.)  Jenelle was hooked up to a video EEG, and we'll be here anywhere from 3 to 5 days for monitoring.  The last time we had a stay at CHOC, Jenelle was in a crib; so this has been a new experience for us.  She is doing well in the hospital bed, and we have a large room to ourselves with a pad on the floor so she can play. I was relieved they had a pad for the floor because - yuck - hospital floors, and YAY, she can play with her toys more comfortably!

So yesterday evening, we marked what we thought were small, short absence seizures.  In speaking with Dr. Tran today, as it turns out, the seizure activity I marked wasn't seizure activity at all!  Apparently, it was just Jenelle being Jenelle, and her "non-responsiveness" is more behavioral - i.e. Jenelle just likes to check out of a conversation once in a while!  Gee, don't we all?

The activity we marked last night was very, very similar to her absence seizure, except she wasn't drooling.  I just figured we didn't have drool because they were so short.  good to know, but frustrating that we haven't caught any seizure activity. The doctor is going to decrease her medication tonight to see if we can get more seizures. 

I know it sounds weird to ask for prayers for seizures; but truly it would help to capture seizures on the EEG so please send prayers, and seizure vibes to Jenelle that she gives them what we need to see!

Jenelle is doing well and likes having meals delivered to her whenever she wants!  However, I think the environment has her a little off schedule - Jenelle woke up at 4:00 am and did not go back to sleep (despite my best efforts at playing music, playing her audio book and singing) until 10:30 am.  Mommy is very tired to say the least! We're going to try to keep her awake tonight a little longer than normal to help with sleep deprivation (and hopefully that will bring on seizures!)

The other good news from Dr. Tran was that her MRI was normal.  In fact, according to the doctor, her brain is "very normal and healthy!"  Doesn't it just make you wonder what is going on in that pretty head!

So, day two is almost to a close.  Again, please send us all your unwanted seizures!  We can use them!  I'll keep you posted!

Monday, October 13, 2014


Jenelle at Mommy after the CHOC Walk 2014!

Yesterday, Jenelle and I got up and out the door at 5:00 AM to participate in the CHOC Walk in the Park at the Disneyland Resort (a 5K).  The walk was at capacity, and Jenelle got a little cranky at teh end, but we did it!

It is not too late to support Jenelle - if you can make a donation, please do so at this website!  THANK YOU!

Jenelle's CHOC Walk Page