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.* 


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!