Thursday, September 03, 2020

2020 - Oh my how you suck!

Where were we last - April 2019?  Wow.  I don't really have an excuse for not updating.  Life happens... and then we have 2020!

Before bringing you up to date with Miss Jenelle, I have to acknowledge the current state of affairs in the world.  The world is now learning to acknowledge that individuals with pre-existing health issues need to be protected. We wear protective masks... we wash and wash and wash our hands... we stay home.  It's not easy and for special needs parents it’s like experiencing the fear all over again each and every day.  To say I've experienced days of PTSD is an understatement.  To stay home was a fairly easy adjustment for us.  We really don't go out much, and our first thought before making any plans is "Who is going to watch Jenelle?"  And those plans can be as extravagant as the getaway Brett and I had to Oxnard, CA for my 50th Birthday celebration in January, or as simple as who can watch Jenelle for 10 minutes while I jump in the shower?

The world now has a "New Normal."  Yeah.  Love that catch phrase!  We've experienced so many "new normals" that I don't really think of everyday life as normal anymore.  It just is what it is.  

So... Let me finish 2019 for you.  We were in April 2019.  We were giving Epidiolex a try...  

We had lots of hope, and gave it a good try, but alas like so many drugs it was not the miracle we hoped for.  In May or June, we were admitted to CHOC for an overnight EEG to confirm our suspicions that Epidiolex wasn't working.  While in hospital, and once we agreed with Dr. Tran that it wasn't working, we were able to safely wean Jenelle from Epidiolex and place her on a therapeutic dose of Depakote.  What?  If you recall, we had tried Depakote two years prior with disastrous results.  Jenelle has a gene that does not allow her body to properly digest Depakote and she was hospitalized for vomiting and low ammonia levels.  So why in the hell would we try that again?  Well my friends, we have a lot of faith in our Neurologist Dr. Lily Tran.

Dr. Tran kept bringing up the idea of going back on Depakote.  For kid like Jenelle with the genetic condition, Depakote works well if taken in conjunction with Levocarnitine.  At the time, there was another drug study hopefully in the works, but nothing left to try once we ruled out Epidiolex.  So, while in hospital, we agreed to go back on Depakote while in hospital so Jenelle could get a "loading therapeutic dose" of Levocarnitine before beginning.  And wouldn't you know, she has had great seizure control ever since!  Depakote combined with Felbamate is the cocktail that is working for us for now.  Her VNS is still helping as well.  Jenelle still has daily seizures - anywhere from 3 to 15 head drops.  But it's acceptable.  

So, we have seizures controlled, but as with any special needs child other issues can sometimes rear their ugly head.  Enter "Gastroenterology" issues... specifically, severe constipation issues.

About a month after starting Depakote, Jenelle started having a lot of vomiting.  I was convinced it was the ammonia issues, but alas I am not a doctor!  We took her to the ER where they found that her ammonia level was fine, but she was back up.  So backed up that her bowels stopped working.  They call that an ileus.  Turns out when that happens, food comes back up instead of out the bowel.  She was miserable.  Enter Daddy, who was not simply going to take her home with stronger laxatives.  We demanded a meeting with all of GI and they provided us with an option for "daily water enemas".  The system is called Coloplast, and it is used mostly for children or adults who are paralyzed from the waist down.  It works really well... no over the counter enemas and Jenelle's BM are very, very regular!  Happy girl!  I'm skipping over a lot of detail, but really, you will thank me!

So things were good for a few more months, until they weren't again.  Right around Jenelle's birthday, she did a face plan (seizure induced) on one of her toys.  She cried a lot, we soothed her, there was blood but everything seemed fine.  OMG, I didn't even post about Jenelle's 17th Birthday!  Wow, this blog has been neglected.

Around Thanksgiving, Jenelle started to go on food strike.  She would barely eat, and we were getting worried.  Lots of drooling too.  We were going round and round with each specialist (neuro, GI, etc.) and really not finding any answers.  Then, just after the New Year, Jenelle had a dentist appointment.  As it turns out, her two front teeth were badly infected.  How does that happen?  Well remember, she chipped a tooth in 2018 right around Christmas.  Then, that face plant in October probably damaged them further.  We don't know.  But the dentist told me they would schedule her for extraction.  Excuse me?  Extraction?  Yes.  Pediatric Dentists rarely do root canals for special needs children.  In fact, it wasn't even covered by Medi-Cal.  Pulling out her two front teeth was the only option.

Got that news around January 4, 2020.  I had a pit in my stomach for days.  I had failed her.  My 17 year old Baby Girl was going to have her front teeth removed!  Not really any options for replacement either - she will probably fall again from a seizure and break them too or worse.  I was just sick.  I just knew this New Year was going to be challenging one.  Oh wow, I had no idea how right I was!

 I will update soon (PROMISE) for 2020!  After all, Miss Jenelle is almost 18 AND a senior in High School!  What?  How did that happen!


Celia said...

Thank you for the update.

Meritt said...

Come back and update.... :)