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!  

Monday, August 18, 2014

A long overdue update on Jenelle...

Wow, so much to say... here we go!

As you may recall, at our last appointment with Dr. Shields, he announced his official retirement and that it was the last time we'd be seeing him.  We knew this was coming, but I was shocked it came without much warning.  Regardless, Dr. Shields, Sue Yudovin and the entire Pediatric Epilepsy Department at UCLA will always remain in our highest regard.  We owe them so much.

So, onto a new Neurologist.  I was confident with Dr. Shields recommendation to return to CHOC and have Jenelle seen by Dr. Zupanc, the head of CHOC's epilepsy program.  We had an appointment for the end of February, until we were informed that Dr. Zupanc had began an unexpected leave of absence.  CHOC offered other Neurologists, but I decided to wait it out to get an appointment with Dr. Zupanc if and when she returned.  Ultimately, I had learned though patients of Dr. Zupanc that she would return to CHOC, but would not be accepting new patients preferring to "oversee" cases rather than run them.  With that news, I made an appointment with Dr. Lily Tran, a well recommended Epileptologist with CHOC, for July 30.

Our first appointment with Dr. Tran was AMAZING!  We literally spent two hours with the doctor reviewing Jenelle's medical history from pregnancy to present day!  She was fun, energetic, easy to talk to (especially for Brett) and very interested in improving Jenelle's quality of life.  Dr. Tran has ordered a full work up including a sedated MRI for August 21, and a hospital stay at CHOC's Epilepsy Monitoring Unit for 3 to 5 days in late October.  The visit in October will include a Video EEG, some genetic testing and a visit with Dr. Tran's entire team.  It should be very valuable in determining where Jenelle is and what is going on with her seizures.  I was very pleased when Dr. Tran stated that given all of the obstacles we had in the first few months of Jenelle's life (i.e. realizing now that she was having seizures months before she was diagnosed and treated) Jenelle was doing really well and perhaps better than expected for an LGS patient.  What a nice compliment to us, and to her previous medical team at UCLA.

Now, along with all the new testing to be done at CHOC, Jenelle is finally getting an evaluation and assessment of her communication skills via the California School for the Blind.  We have an appointment on August 25 for a "Functional Vision Assessment of a child with Multiple Disabilities" with the Berkeley Eye School located in Berkeley.  Aunt Norma and Uncle Dave will be our hosts for our visit to he bay area, and we are looking forward to spending time a little time with our family in Northern California.  After that assessment, the California School for the Blind, and Diagnostic Center of Southern California will visit in early October to evaluate Jenelle's communication skills and adaptive technology needs.  All of this is happening as a result of our IEPs during the last year and a half. 

Speaking of school and IEPs... we have agreed to have Jenelle move to a new moderate/severe special needs program located within our District at Currie Middle School.  Jenelle is moving up and will be on a new campus, with a new teacher, new class room and new friends in 6th Grade.  I can't believe both kids are in Middle School!   Jack is very excited for his final 8th Grade year at Utt Middle School (yes, unfortunately they go to different schools!)  I am also very pleased that Jenelle's IEP team is very interested in considering the TOBII device that our friend Lily in Arizona is using for communication!

While there will be a lot of upcoming changes for our girl, one thing will remain the same.  Jenelle will continue to go to the YMCA After School Program and be with the same one on one Inclusion Aide that she has been with for two years at Benson Elementary.  The YMCA inclusion program says they can stay enrolled until age 13, and possible even a year after.  So after school at Currie, Jenelle will be transported by bus to Benson to stay at YMCA until pick up at 6:00 PM.

So, there you have it.  Lots going on and lots to look forward to in the fall.  Thank you as always for your continued prayers.  As always, I'll eventually keep you posted on our journey!

Thursday, June 26, 2014

Photos before updates

I have a lot to update our sweet Jenelle about since my last post in ... gasp .... January!  But first, how about some adorable photos to give you an idea of why I've been so busy?

Grandpa Denny, Grandma Marianne and Mommy traveled to Minneapolis, Minnesota in early April to attend the Little League International Congress on behalf of District 30.  We saw snow and warm temperatures and everyone came home with the flu!

Traditional Easter Photo with big brother JD.

These two really love each other!

All the cousins at Easter - so hot they posed in swim suits!

Miss Jenelle had it easy during the egg hunt as she sat next to her basket and the boys ran by to drop eggs in her basket!


Another fun season of Challenger Baseball!

Miss Jenelle is promoted to 6th Grade - Big Girl Middle School here she comes!

Tuesday, January 28, 2014

Happy New Year - New Follow Up at UCLA!

Did I really miss an update in December?  Wow, how time files.  Actually, there was not much to report until our follow up at UCLA yesterday.  We spent November and December watching Jenelle have many absence seizures (including some clusters requiring Diastat) while we waiting for authorization from our insurance for an over-night Video EEG and VNS consult at UCLA.  While our follow up was scheduled for December 30 - we were rescheduled to January 27 due to the New Year holiday.  And of course, our insurance changed on January 1, so the process of getting authorization had to start all over again.  So really you haven't missed anything - just the waiting game and jumping through more insurance hoops. 

So yesterday, Jenelle and I made the trip up to UCLA for our scheduled follow up with Dr. Shields.  As for Jenelle, the appointment was rather non-eventful.  Dr. Shields and I reviewed the delays regarding the authorizations, and discussed her recent seizure activity.  And then to my surprise, Dr. Shields said he's prefer to wait on the VNS and EEG until she starts her period.  Jenelle is 11, and has been showing signs of puberty for over a year.  Dr. Shields says that sometimes with a child like Jenelle, the increase in seizures goes away once she starts her period.  We both agree we are about a year away from that - since we've already passed the years to worry about early onset.  He suggested keeping a journal now of her hormonal behavior to see if it cycles.  Makes sense really.  And just as I was about to feel somewhat discouraged because he wanted to "wait and see" once again on the tests I was hoping we'd pursue..., Dr. Shields announced that he was fully retiring and this was our last visit.* 

WOW.

Brett has a theory about neurologists and other experts.  He thinks that you absolutely despise and hate the first neurologist you see, because obviously your getting the horrible news no one ever wants to hear for the first time.  You hear words from that first doctor like "seizures" and "drugs" and "no cure" and "short life", and you get angry.  You immediately dismiss what you are hearing and decide to get a second opinion; because really it can't be any worse, right?  And then you see your second (or third, or fourth) neurologist.  In reality, you hear the same thing - but maybe the news is delivered this time a little bit gentler, with a slight tone of sympathy.  All of a sudden this next doctor is the next best thing to sliced bread, and you mentally accept and process everything you are hearing about your child, and you decide to stick with this doctor to the end.  Whether that end be a change in location, the end of the child's life... or retirement.  Let's face it, doctors are not God... they are human!  They are entitled to enjoy life just as much as anyone.

In many ways, Brett's theory is somewhat true about our experience with the first neurologist we met, and Dr. Shields.  But those feelings were not because of the order in which we saw these doctors.  We were fortunate to live close enough to a nationally renown teaching medical center that just happened to have one of the top five pediatric neurologists in the world.  Of course we love him, idolize him and think of him as God.   He was the only neurologist at the time in our area with enough experience to treat a child like Jenelle.  However, I don't think the situation was as black and white as Brett makes it.  Yes, I disliked our first neurologist.  His constant warnings to me that  I needed to quit work and stay home with Jenelle because she only had a couple of years to live did not work well with my optimism.   Instead, Dr. Shields had a way of delivering the facts and yet not making us feel guilty for our choices.  A better bedside manner if you will.  Sure he gave us a similar prognosis, but because of his vast experience in treating so many other children like Jenelle - his delivery was much more compassionate.  We owe so much to Dr. Shields.  He not only extended Jenelle's life expectancy, but he also gave us many reasons to feel confident in the choices we make for Jenelle and our family.  We wish him every happiness in his retirement and he will always be in my prayers.

Unlike my bursting into tears when my oncologist Dr. Mary Territo announced her retirement to me last summer; Dr. Shield's announcement was one that I had been expecting.  A few years ago, he "semi-retired" himself, cutting his patients down to just a handful - Jenelle was one of the few he kept.  And thankfully, things have changed in Orange County for the better.  Children's Hospital of Orange County has a fantastic head of pediatric epilepsy - Dr. Mary Zupanc.  Dr. Shields knows her very well, said he is an e-mail away, and sends us back to Dr. Zupanc and CHOC with his blessing. 

After a big hug, we left and I immediately called Jenelle's doctor to begin the referral process back to CHOC and Dr. Zupanc.  I know and hope that Jenelle will have many neurologists in her lifetime.  And because of Dr. Shields' expertise and guidance in the beginning of her life, I feel confident that Brett and I have the educated tools to make all the future decisions we need to make for Jenelle.  I think it will be very refreshing to see someone new, who may have different ideas on where we go next.  So with mixed emotions I am somewhat excited for the change.  Or maybe it's just my optimism.

So for now, everything is on hold as we wait to see our new neurologist.  As a just in case, we made a follow up appointment for UCLA for late June.  Either way, I know Jenelle will be just fine.

Thank you for the continued prayers - I'll keep you posted.

*I specifically asked Dr. Shields if it was OK to share his announcement of his retirement on our blog.  He said he was not keeping it secret.  Again, we wish him many wonderful, happy and restful days in his upcoming retirement - he has certainly earned it!



Monday, November 11, 2013

Since Health Insurance has been a topic of conversation lately; let me tell you a story...

There has been a lot of talk about ACA/Obamacare and problems getting and keeping insurance ... It has me worried that this is just the calm before the storm.  Although we haven't had our enrollment yet, my employer has told me not to worry.  And I shouldn't have to - we get our health care through my employer which is a group of over 200 employees, and with that I pay through the nose for a decent HMO.  Usually, I love my HMO, however, recently we experienced our first problem that put Jenelle in a life threatening situation.

Insurance policies are changing everyday, and it seems we keep paying more out of pocket.  With an HMO, more hoops are added to jump through; especially when drugs that were once approved now need special "authorization."  Our problem started last month when I tried to re-fill Jenelle's Vimpat.  NOTE - Vimpat is not a newly prescribed drug for Jenelle, but rather a drug that she has been taking successfully for nearly 4 years.  When I went to Target on October 15 to get her monthly supply... by the way, I LOVE my Target Pharmacy (located at Irvine North on Jamboree in Irvine) for reasons that will reveal themselves as this goes on... I was informed that our insurance, Aetna, did not "approve" the refill.

At first, it didn't really phase me.  "Oh, I must be a week early" I thought.   I usually make a trip to Target Pharmacy, which is now 5 miles out of my way since our move, at least every two weeks to pick up Jenelle's medications.  I know their staff very well, and we are usually on a first name basis.  I left that day with the other prescriptions that were ready and didn't think anything of it.  When I got home, I realized we were down to 4 pills of Vimpat.  I was not early and something was wrong with the authorization. 

I went to Target the next day, and they tried to run it again.  Again, it was denied - this time, it said they were waiting for "authorization" paperwork from Dr. Shields at UCLA.  So, give that I had two days left, Target gave me 6 pills to carry us over a few days until the insurance glitch worked itself out.  Some pharmacies would demand I pay the full price and then reimburse me later.  My Target doesn't do that to me if only for the way that they truly care for Jenelle.  By the way, my Target (Irvine North on Jamboree) has two fantastic employees who really understand the ways of the insurance billing world.  Anna and Stephen.  Go there, ask for them and thank them for all they do for Jenelle.  So with a 3 day supply in hand, Anna and I agreed that she would call the doctor and work on it.  I thought nothing of it until I got the mail that weekend.

That weekend I received a 6 page letter from Aetna explaining that they were denying coverage of Jenelle's Vimpat... a drug that she has already been taking for nearly 4 years ... because,

"Coverage of the requested drug can only be authorized if:

  • The member has a diagnosis of partial-onset seizures.
AND
  • The member has documented concurrent therapy with one of the following: Carbamazepine, divalproex dr/er/sprinkle, gabapentin, lamotrigine, levetiracetam/ER, Oxcarbazepine, Phenytoin, Topiramate, valproic acid, or zonisamide."
You've got to be kidding me, right?  Aetna presumes to know more about my daughter's seizures than her own doctor... who also happens to be one of the top pediatric neurologists in the world?!  Where the hell did they come up with this?

So, at this point, it just so happened that we were going to UCLA that week.  I went back to Target, told Anna I'd work on it too, and got another 6 pills for another 3 days.  At UCLA, I spoke to Dr. Shields's nurse Sue, and she pulled her file, found the paperwork - realized it had been completed incorrectly by an intern - and said she would take care of it.  On a side note... Sue gave me a sample packet of Vimpat, so we were covered for 7 more days, assuming it would be no problem to reverse the denial.  And yet, another week went by and nothing changed... Vimpat was still being denied.

After Halloween, we were still getting denied, even with UCLA filing a second appeal.  We were getting down right desperate as I was literally going to Target every 3 days for 6 more pills.  Finally, I made a call to Aetna on my own.  I got a really nice man named "Bob" who said he understood my frustration, and could fix it in 5 minutes if only the doctor would simply call him.  Well, we were delayed a bit as Dr. Shields at his staff were out of town for a seminar.  6 more pills to hold us off.  I was seriously getting frantic.  We absolutely could not afford the $1,260 out of pocket payment for the drug.  I am so very grateful to Target for their patience and their help. 

Soon, we learned that the second appeal was denied.  At that point I called Aetna again and arranged a conference call with Nurse Sue.  I explained to Aetna that stopping the drug cold turkey would put Jenelle into status epilepticus thus most likely landing her in the hospital in the PICU... and how would they like to pay for that?  Further, stopping a drug that was already working, and that she had been taking for nearly 4 years might ruin the effectiveness of the drug.  Nurse Sue chimed in that Aetna's denial of this drug was literally putting Jenelle in a life threatening situation and that if the Aetna would not approve it, her only advice to me was to get an attorney.  What do you know?  Aetna listened, but not without insisting that Nurse Sue provide a letter from Dr. Shields stating that the situation was life threatening.  Two days later.. APPROVED!  Almost in time for her November refill!

Sue and I agreed... Target was the hero in all this.  They not only spent lots of time dealing with Aetna, but they continued to provided Jenelle with her mediation, even if I had to drive 5 miles out of my way every 3 days to get it.  I am a customer for life!

And I realize, I am fortunate to have health insurance through my employer, and to not have to worry about the cancellation letters people are getting right now.  The scary thing is that this is only the beginning of the changes we are seeing in health care because of Obamacare.  I truly feel sorry for my friends getting cancellation notices... and in my gut I know, things are not going to get better anytime soon.  OK, off my soap box. 

As for an update on Jenelle - she had a grand mal the early morning after Halloween, and then vomited later that day.  Her absence seizures are still unstable, but we are thinking the grand mal was due to illness as opposed to the other things going on.  Still waiting for the Video EEG to be approved... hopefully we'll hear something soon, unless Aetna has other ideas!

Thanks for the continued prayers!

Friday, October 25, 2013

Updates from UCLA for Mommy & Jenelle

Yesterday, Jenelle and I made the trip to UCLA for follow up appointments.  Jenelle's appointment was first at 11:00, where we met with Dr. Shields nurse Sue Yudovin.  Of late, Jenelle has been very quiet and to herself.  Sue noticed immediately that she was not her usual happy self and wondered if it was due to seizure activity.  After a lot of discussion about recent events including our trip to CHOC via ambulance, we decided we need more information rather than simply increase medication. 

So, right now, Dr. Shields is going to order a 24 hour Video EEG to be done at UCLA so we can see if Jenelle is having sub clinical seizures that we are simply not seeing, or of there is any new seizure activity.  Her last Video EEG was approximately 3 years ago, so it's time.  We are hoping to get that done before Thanksgiving, but of course it all depends on insurance ... and the availability of hospital beds.  We also talked about the possibility of implanting a VNS (Vagus Nerve Stimulator) which could be used to stop cluster seizures instead of relying on Diastat and other meds. I think we approached the idea of the VNS a few years back, but it was put on the back burner in light of my cancer.  Of course, a Video EEG will be necessary to determine if she can be a canidate for the VNS, so we'll kill two birds with one EEG, hopefully!  We are going to keep her medication levels on hold for now in case we need major changes after we get more information from the EEG.  Please send some positive thoughts that this gets approved quickly.

As for me... my labs were perfect!  We still don't know about the results of my cancer screening as that takes a week or more, but most likely in light of my recent numbers, it will be clear - knock on wood!  As you may recall, I've been having bleeding and clotting issues recently that they were trying to stay on top of.  All of my clotting numbers were normal as were my platelets, so things are good!  I go back in 4 - 6 months for another follow up and am poised to hit my 5 year cancer free anniversary without a hitch! Wahoo!

That is all for now - I'll post more as we get a date for the EEG.

Tuesday, October 22, 2013

11 Years Old!

I know this is going to be a fantastic year for our Jenelle; after all, 11 is my lucky number so it has to be hers as well!  Wow, 11 years old!  8 years ago, I could never possibly imagine this day, yet here we are.

So, what's new for our girl?  Well, since our infamous ambulance ride to CHOC in early September for the 35+ minute seizure, we've still been battling too many cluster seizures (absence seizures).  So much so, Dr. Shield's Head Nurse Sue has decided to see us before our scheduled appointment in late December.  We will travel to UCLA on Thursday for that follow up.  As of now, Jenelle is completely off Felbatol, and on a fairly strong dose of Onfi at 15mg twice a day.  Since that status seizure in early September, we've used Diastat twice more, which is 3 times too many in the last 6 weeks!

THANK YOU to all who made donations towards Jenelle's goal for the CHOC Walk.  We woke up early last weekend and walked a 3K through the park... however, the best part of the walk was when Jenelle got excited to ride the tram... her favorite ride at Disneyland.  In all, she raised $685, and our team raised almost $2,000!  It was a wonderful day - here is a photo of our team:


Team Stradling Yocca Carlson & Rauth at 6:15 AM! 



On Sunday the 20th, we celebrated Jenelle's early birthday with family.  We had tacos... Jenelle's favorite... and an ice cream cake from Cold Stone Creamery!  It was a perfect!  Here are some photos for you to enjoy! 



Mommy & Jenelle

Jenelle & Daddy

Aunt Shelly holding Jenelle as we sang Happy Birthday

Oreo Overload Birthday Cake!

All the cousins - Anthony, Trevor, Aiden, Jack, Kiersten, Aunt Shelly and Jenelle


Thank you all for the love and prayers all these years.  I'll update again after our visit to UCLA.