Thursday, February 05, 2015

And before you know it... it's February!

Well, it seems I'm very remiss in updating.  Where to begin?

I could have sworn I posted an update since we left the EGG in October.  Apparently not... so let's start where we left off.

After Jenelle's EEG, we made some major changes in her medications.  Adding back Felbatol (Felbamate) really made a difference... both in seizure control, vocalization and awareness and unfortunately with some insomnia.  We had nights where Brett and I were in bed and we started hearing Jenelle's toys at 3AM... only to find that Jenelle had somehow made her way out of her bed, down the hall and into the living room to play.  At 3AM.  Overall, now that we knew what to look for, we realized how much the Felbatol really controlled her seizures.  Since adding it back, Jenelle has not had a tonic or grand mal seizures once!  (knock wood!)  Once the initial side effect of insomnia wore off, we cruised through the holidays with much seizure control, and lots of fun watching Jenelle be more alert, aware and vocal!

On January 9 we had our follow up with Dr. Tran.  Sometime during the winter vacation, we started to notice Jenelle having some break through complex partial seizures lasting 20 seconds or more, but never clustering.  When she has this seizures, her eye brows do funny things - I call it the Groucho Marx seizure.  Upon describing them, Dr. Tran believes they are complex partial, but not much to be worried about given Jenelle's constant electronic activity.  Dr. Tran was pleased with Jenelle's progress, and said that we had room to increase Felbatol (double the dose) to see if that helped the new seizures we were seeing.  We also decided to lower the morning dose of Onfi, to help Jenelle stay awake during the day.  Unfortunately... I goofed, so we had an increase of seizures recently.

You see, our insurance at my firm changed again on January 1.  Knowing we no longer had to go "out of network" for Jenelle, it completely slipped my mind to ask for a case manager when switching from one insurance to the next.  With the new written prescriptions in hand, we took them to the pharmacy only to learn that our "new insurance" needed a prior authorization before approving the medications Jenelle was already taking - you know the drill, "We won't approve this, until you've tried X, Y, Z first..." etc.  So we had a delay in getting the Felbatol pills when I already decided to decrease Onfi.  Great... even more seizures as we waited for the increase to be approved!  Finally, we got approval and we were able to get Jenelle on the full dose as of last week.  So far, no effect on the new seizures, but we'll give it more time.

So, that is all for now.  I'll update with photos from the holidays when I can.  Thank you for the continued prayers... we'll keep you posted!

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

Friday, September 05, 2014

We survived, but barely! First day of Middle School for Jenelle and other updates

Well, we survived the MRI, the trip and exam at Berkeley, and now, the first day/week of Middle School ... barely. 

Actually, I should have known better.  Jenelle has been out of her routine since August 21 - and she has certainly been trying to communicate that these past few days.  Not a happy girl at all!

Jenelle's first day at her new Middle School was not great.  The poor child was very upset with the new routine and showed it by screaming, crying, biting herself and pulling her hair!  I received a call from her new teacher that afternoon and the school nurse asking for things they could do to make it easier.  My only explanation is that Jenelle was fed up with changes.  I offered ideas to keep her happy, and said we might be in for a rough few days.

When I picked up Jenelle at YMCA, She embraced me with a strong hug and would not let go for at least 5 minutes!  That evening, she was cranky, so I spent some extra cuddle time, and had a heart to heart - explaining to Jenelle that she had a new class, a new school, etc.

Again the next morning, I reminded Jenelle to be patient as her new teacher was getting to know her better.  My talk seemed to help and I got an e-mail stating that Jenelle was happy and finally warming up to her new class.  Whew!

Anyway - here are some photos to enjoy from our crazy end of August!

Mommy and Jenelle snuggles during her MRI

JD and Jenelle on campus at UC Berkeley (note Jenelle's sun glasses after eye dilation)

"I think I want some chips!"

If Mommy won't feed me, I'll feed myself!

First day of school - 6th and 8th Grades 2014!

Tuesday, August 26, 2014

Update re MRI & UC Berkeley Eye Center

All of the testing I previously mentioned in the last update for Jenelle has begun.  On August 21, Jenelle had a sedated MRI at CHOC.  Given this child's love for food, I was not anticipating the "fast" before sedation.  I took the day off work, and allowed Jenelle to sleep in as late as possible.  When we arrived for our check in at 11:00 AM, she was just about to show signs of hunger.  Of course, it could have been a perfect event if not for the hour and a half wait for the MRI to get started (on top of the hour and a half that we had to arrive before our scheduled MRI time of 12:30. 

By 2:15, a very cranky Jenelle entered the MRI room, and the anesthesiologist allowed me to place the gas mask over her face to put her to sleep.  We will not have the results for a while; most likely at our follow up visit with Dr. Tran.

On Saturday, Jack, Jenelle and I left for the Bay Area where Jenelle had an evaluation scheduled for Monday, August 25 at 10AM at UC Berkeley.  We stopped that night for a quick visit with Nana and Poppa George, and then drove the rest of the way to Aunt Norma & Uncle Dave's where we briefly got to see cousin Matthew before he left to get back to Cal Poly.  Jack loved the trip, and really enjoyed playing with their dog Murphy.

Jenelle was evaluated by Dr. Orel-Baxter at the Berkeley Eye Center.  Although we won't have the full report for a few weeks, Dr. Orel-Baxter did give us a lot of valuable information that she was able to gather during her two hour exam.  What was not too surprising is that Jenelle is legally blind, seeing what most people see at 300 feet at 20 feet.  They felt her stronger eye was the right, although she has a tendency to look at things from the left side.  The Doctor noticed that her right eye would gaze over her nose, while the left eye would wander away.  Very interesting because when you see her look at things, you would think the left eye was the one that works better.

Jenelle can see colors and can recognize patterns, although her ability to distinguish texture was not completely confirmed.  The most astounding thing we learned is that Jenelle cannot see anything above her nose.  This explains why she arches her back when lying on the floor, or why she tilts her head back when sitting.  The Doctor said that if Jenelle is sitting, and we speak to her while standing, she probably cannot see above our waist, and definitely cannot see our face at all.  Again, it explains so much about her behavior.

The Berkeley Eye Center will submit their report to California School for the Blind in a few weeks, and CSB is scheduled to travel to Southern California to observe Jenelle in the class, at daycare and in the home on October 1, 2 and 3.  After their on site visit, they will submit their final report to our IEP team.

After her exam on Monday, we had lunch on campus and walked around Berkeley.  Jack thought it was a beautiful campus, but his heart is at UCLA.  After lunch, we drove into the City to walk around AT&T Park, Lombard Street and Fisherman's Wharf.  We left super early this morning so Jack could get home in time to register for 8th Grade!  We are almost a week away from the start of school with both kids in Middle School!  It's all going too fast!

We want to thank our hosts Aunt Norma & Uncle Dave!  They fed us well and gave us many tips on driving in Berkeley and in the City. That is all for now - as always, I'll keep you posted!