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!
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