Tuesday, January 12, 2021

Hindsight is 2020~

So, back to our update about Miss Jenelle. My last update left off when we discovered that Jenelle's two front teeth were infected and needed extraction. Poor baby girl. I was devastated that this had been going on for a few months and we didn't get it treated soon enough. On an emergency basis, Jenelle finally got into CHOC for the dental procedure on January 28. 
For a child like Jenelle, all dental procedures like filling cavities and full cleanings have to be done under anesthesia. Our Dentist has privileges at CHOC, and they were able to get her in quickly. While under anesthesia, they got a good set of x rays showing that Jenelle had fractured a third tooth next to her two front teeth. During the procedure, the dentist came out to ask my permission to pull all three. It really was the only option, and I felt miserable. I sent a group text to the family to update everyone and ended it with "Jenelle has shitty parents''... Jack replied quickly "No Comment" which lightened the mood considerably.
Jenelle looked like a Rugrat with her bloody, gummy smile, but she got through the procedure with a smile and looked as if she felt better immediately. In the coming weeks, we noticed that once the infected teeth were gone, Jenelle's smile came back. She was drooling less and obviously in less pain. The bigger problem however was trying to get her to eat by mouth. Also around that time, Covid 19 reared its ugly head.

When the world stopped on March 13, 2020, I decided to stop trying to feed Jenelle by mouth. There was no need to risk aspiration ending in pneumonia or worse with a global pandemic. Basically, we were going to try to avoid anything that could land us in the ER.

All special needs kids function best when on a strict schedule. In talking to a lot of other parents in support groups - the global shut down from the pandemic came with mixed reactions from special needs kids. We were very fortunate that Jenelle loved it. She loved having everyone home, including big brother and as a result, we saw less seizures.

Like everyone, we had to find a new way of doing things - like school. From March to the end of the school year, Jenelle attended class twice a week via Google Class Room for a 30 minute check in with her teachers. I became her teacher and while also trying to work part time as a paralegal, I had to figure out how to do the teaching job of Jenelle's Special Education team. IT was not easy. We watched a lot of Kid You Tube - SAG/AFTRA Storytime, Science Guy, videos of dominos setting up and tumbling down, and a hamster who liked to run through obstacle courses. When June rolled around, I think we all (and with that I am including Jenelle's Special Education Team) realized this was not enough.

Because of the severity of Jenelle's special needs, she qualifies for what they call Extended School Year (ESY). The week after the last day of the 2019/2020 school year, Jenelle began a more rigorous schedule with Google Meets twice a day for 30 minutes for the next 5 weeks. Her teachers and therapists introduced me to many apps to use on her school issued Ipad, including SoundingBoard which had a "yes/no'' switch. I also found cause and effect Apps that Jenelle immediately recognized and enjoyed playing with. Over these 5 weeks, I began to learn how Jenelle communicates. I learned her likes and dislikes and really began to appreciate the education she has been getting. Without witnessing it, I had such a misconception of what "should'' be happening and why. 
Although Jenelle is non-verbal; she can communicate. She has a definite head nod for a yes, and looks to her right for no. She loves music, and any video with classical music especially. When I show her the communication board we created for yes or no, she will specifically look at the "button" she wants to select. She enjoys seeing her teacher, aides and classmates. She hates PE. By the end of the ESY, the Team (her teacher, her aides and me) really have an excellent routine that is working with the goals of her IEP.
The new school year arrived, Jenelle's Senior year, and we are still in this pandemic. Staying the course, we kept her at home with online school. Things are going well.

Another huge milestone in 2020; Jenelle turned 18 in October. What this also means is that we had to hire an attorney to file for Limited Conservatorship for Jenelle so that we can continue to guide her medical decisions and such. Our hearing was two days before her birthday, and she got to keep her right to vote, and voted in the 2020 Presidential election.

I really meant for this update to publish sooner, but this year has been exhausting. We are very blessed in that Brett and I have jobs that are thriving, we've spent extra time with our kids at home, and we've really gotten to know Jenelle even more than we did. 
Today is January 12, 2021. Jenelle is still taking online classes and I don't imagine she will return to in person class until after Spring Break, maybe even ESY. We received an email allowing us to register for an appointment for the vaccine, but every day that I check it, all the appointments are taken. But it will happen, and life will get back to a "new normal".

And now, because I am just so incredibly proud of this "normal" milestone for Jenelle - I give you her senior photo... Tustin High School Class of 2021!

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!

Wednesday, April 17, 2019

Happy Spring!

Epilepsy families are superstitious.  I've been waiting to update, worried that I've jinxed things, but am slowly realizing that our new drug isn't all that we hoped it would be.  I realize my last update was November, but so much has happened it would have been over-kill to update with every changing moment.  Here's a summary...

November 26 - We were approved for Epidiolex, but then we had to wait for insurance to figure out how to bill it.

November 26 - December 11 - Jenelle's seizures were so bad, we increased Felbamate because we couldn't wait for Epidiolex. Took a week to get to the "therapeutic" dose of Felbamate.

December 24 - Jenelle has blood work done.

December 27 - FINALLY - we get Epidiolex in hand after Dr. Tran's office worked a miracle.  We started slowly, smaller doses to wean her onto the drug.  Within the second Day of Epidiolex, Jenelle started to smile again, and we had giggles!  She woke up one morning giggling and we were pretty excited.

January 2 - Dr. Tran's office called with Jenelle's Felbamate levels stating that they were "too high."  However, we were seeing our BEST seizure control and we really didn't want to make changes, but Dr. Tran insisted that we decrease Felbamate.

January 15 - We are finally on the full dose of Epidiolex, and the reduced dose of Felbamate.  Not the same control as we saw in the first few days, but still better.

January 22 - I call for a refill, and it is denied by insurance!  Long story short, Jenelle goes OFF Epidiolex for 6 days until the refill is processed.  Unfortunately, seizures increase.

February 5 - Jenelle is diagnosed with Influenza A after 4 classmates are out with the same, and she has small symptoms.  She starts Tamiflu, and seizures wreak havoc!

February 28 - We visit Dr. Tran, and decided to slightly increase Felbamate, and stay the course with Epidiolex.  We have another follow up in March and we stay the same with a slight increase in Epidiolex.

And now we have arrived to our current status, which is lots and lots of seizures.

For a while, I was hoping our issue was that we had made too many changes at once.  It's vicious and you have to have patience.  But with the Felbamate levels changing, the Epidiolex changes and the flu - it's been pretty hard to figure out what if anything is working.  Now that we are almost 3 months out, I think I can safely say the Epidiolex isn't working.  We have a scheduled overnight EEG in June, so things are going to stay the same (medication wise) until then.  Still keeping our fingers crossed that Epidiolex is our miracle drug, but trying to keep it real at the same time.

So, that is all for now!  In March, Brett and I were invited to attend a CHOC Fundraiser with Dr. Lily Tran and we absolutely enjoyed the night out with adults - talking about everything but Epilepsy!  Here are some photos from that event.

That is all for now!  As always, I'll keep you posted.

Tuesday, November 20, 2018

I want a new drug...

I suck.  Seriously, life is moving and I find it hard to post updates here about Jenelle because everything is status quo.  So, since my last update in April, 2018, a LOT has changed with Jenelle.  The good news is that we have a new hope.

As mentioned, back in April we were hoping to wean Jenelle off some medications that she was taking that would exclude her from a new drug trial at CHOC.  I didn't want to give specifics about it in case it kept us out of the trial.  We successfully weaned Jenelle off Onfi, Banzel and lowered her Risperdone from 3mg a day to 1 mg three times a day.  The Risperdone wean was torture as we had a summer of grumpy, cranky Jenelle.  We finally decided to stop the wean and keep it at a lowered dose.  Unfortunately, we didn't wean fast enough and we missed the window for that drug trial.  At this point, Jenelle was only taking Felbamate and Risperdone for seizures and behavior, and we had increased the VNS settings "Rapid Stim" meaning it will send something to her brain continually.  This helped a bit.

Then, on June 25, 2018, everything changed.  The FDA approved it's first cannabis drug, a drug called Epidiolex specifically created for difficult to treat Epilepsy.  Brett and I were inundated with calls, text messages, e-mails and such asking us if this was something that could help Jenelle.  I had heard about Epidiolex, but had also read that the trials were done on children with Dravet Syndrome, something Jenelle does not have.  However, this was good news.  And then, I learned that Epediolex was not only approved for Dravet, but also for patients with Lennox Gastaut Syndrome.  Finally, some hope!

If you recall back in 2017, Jenelle was regressing so much, and we had exhausted almost all the medications known for Lennox Gastaut Syndrome that our only options remaining was the new drug trial, a drug called Fycompa that had some nasty behavior side effects that we were hesitant to try and possible surgery or medical marijuana.  Brett and I have always had marijuana or CBD oil as a last resort because neither of us have ever used marijuana, and we just didn't know what we were getting ourselves into.  We were almost out of options, and just waiting for science to catch up!  And then... it did!

In late August, I sent an e-mail to Dr. Tran about Epidiolex.  She said she was still waiting for the FDA to decide how it was going to be distributed, but that Jenelle was top on her list for the drug.  Funny thing, when the FDA first categorized Epidiolex, they put it in the same category as Heroine.  Something that would have made it impossible for our doctor to prescribe.  Dr. Tran was working with others and the FDA to fix this classification.  Once that was fixed, The FDA then had to decide how to dispense it.  Was this something we could only get at the doctor's office, or at a specialty pharmacy, or at our local CVS/Target?

Today was the magic day.  I got a call from CVS Specialty Pharmacy and we've been approved by insurance.  This morning, Dr. Tran e-mailed the titration schedule, and as soon as we have it in hand, we are ready to go!  This could not come soon enough.  Because we weaned Jenelle off all but one seizure medication (and the VNS) Jenelle's seizures have gotten worse.  We debated with Dr. Tran about increasing her Felbamate, but decided to wait it out.  In the last month, we've used Diastat three times and I was worried we couldn't wait much longer.  Knowing it could arrive any day makes the worry go away some.

So, will this be a miracle drug?  Maybe.  In my Lennox Gastaut support groups, I've read update from families that were on the Epidiolex trial.  They studied this drug for 4 years!  Many LGS families have reported amazing results - less seizures, more comprehension by their child, more vocalization  as non-verbal children now having actual words in their vocabulary! And some families who didn't see much improvement.  For the most part, the results are good, so we are hopeful and will keep our fingers crossed.  Any improvement has to be better than where we are now.

Brett asked me the other day if I thought this could really be a big change for Jenelle.  Honestly, I'm more scared that it might actually work for Jenelle than I am of it failing her.  As always, I'll keep you posted.

In other news, or girl turned sweet 16 in October.  This school year has been crazy with big brother Jack applying to colleges and Jenelle a sophomore at the rival high school.  We're enjoying life for now and hopeful more in the future.  Here are some photos from the summer and Jenelle's birthday.  Thank you for the continued thoughts and prayers.

Grumpy Jenelle on Mother's Day

Grumpy Jenelle on 4th of July!

Bored Jenelle at JD's scrimmage.

First day of School - our new Senior and Sophomore.

Grumpy Jenelle getting a kiss from Daddy.

Senior Photo day.

Happy Jenelle at the Angels Challenger Day Games celebrating her 16th Birthday with her friends!

A special play date with her former aide Gerri.


Tuesday, April 24, 2018

Oops I did it again!

No update since OCTOBER!  Yikes!  Apologies...

Since my last update in October, Jenelle has been battling all sorts of things.  Some directly related to seizures, and some not really related to seizures - specifically, regular bowel movements and the lack thereof.  Roll back (or fast forward from last October) to Christmas.

On on the morning of December 22, Jenelle got out of bed, walked down the hall and into our kitchen where she had a drop seizure and fell onto the tile floor on her face, chipping her front tooth.  At least, we think that is what happened - we didn't see it. She had been cranky and very constipated the night before, so when we found her crying, at first we thought it was that - once I tried to change her diaper, I realized her mouth was bleeding and tooth chipped, so we took off for the ER.

CHOC ER was quite busy that day, and we waited a long time to be seen.  Initially they took an X-ray almost immediately, but once they realized it wasn't as bad as it looked, we waited like everyone else.  Finally, when we got back to see the doctor, they said the X-ray confirmed the chipped tooth was "cosmetic" and nothing requiring dental intervention... also, the X-ray showed that Jenelle was very, very constipated.  So, while we were there, they gave her two enemas producing a poop, and we left with a very sad, pooped out little girl.

The next few days (during Christmas) Jenelle was cranky.  Assuming it was pain from the fall, we kept giving her Tylenol.  Finally, the day after Christmas, her hysterical crying was so unusual, we decided to take her back to the ER assuming the X-ray missed something with the broken tooth.  After more waiting, more tests and X-rays, we learned that her tooth was fine, but she was impacted with poop throughout her large intestine. We were then admitted for a "clean out".  Two nights later, Jenelle came home happy as can be with a smile showing a chipped tooth.  Other than that... Christmas was pretty great.  Here are some photos:

Mom, Jenelle (who was miserable) and Dad at the
Foothill HS vs. Tustin HS rival basketball game on 12/21

In the ER on 12/22 after the fall - :(

Curran Family Tradition - breakfast at
the mall on Christmas Eve

New Christmas Pajamas!

More miserable Jenelle at Christmas dinner.

Doctor's orders!

Happy girl with a chipped tooth!
Family Christmas Card - 2017

The new year was nice and calm for Jenelle.  We recently had a follow up with her neurologist Dr. Tran, and she was very happy to see Jenelle so alert.  Unfortunately, Jenelle is still having many "drop" tonic seizures - anywhere from 3 to 15 or more a day. Dr. Tran increased the frequency of the Aspire VNS (Vagus Nerve Stimulator) and said that while the seizures haven't improved, she was very happy to see Jenelle so alert instead of looking so drugged.  I admit, I had to agree - since her VNS was implanted, we've been able to take Jenelle off of two seizure drugs - Onfi and Ethosuxamide.  I'll take less drugs for Jenelle any day!

Dr. Tran and I discussed the possibility of Jenelle participating in a drug trial hopefully starting this summer.  If CHOC proceeds with the trial, there are certain medications Jenelle cannot be taking while on it, one of which is Banzel.  We started to wean Banzel and so far, she is doing well with a slight increase in seizures when we lower the dose.  We are taking it slow, and the VNS is working better with more frequency.  We see Dr. Tran again in May when we are completely done with Banzel.  That will leave Jenelle with only 1 seizure medication (in addition to the VNS treatment) - Felbamate.  We'll know more about the trial at our next visit.

I'll post more photos from after new years to present later... just wanted to catch everyone up on our girl.  As always, thank you for the prayers and positive thoughts!  I'll keep you posted (when I can!)

Wednesday, October 04, 2017

October, my favorite month...

Well, it's October.  I love this time of year.  I love fall. And most importantly... I love this month because it is Jenelle's birth month.  And we are long, long overdue for an update.  Let's see if I can catch you up.

June 2017

Jenelle graduated from Middle School and amazed us by walking in her promotion ceremony.  We had a final IEP for transition to High School and won the battle for a one on one aide.  Even more exciting... her 1:1 Aide will be the same woman who has been working with her for the past 3 years.  Sandra is in the photos below helping Jenelle walk at her promotion.  We love Sandra, and we are so excited to share Jenelle's high school experience with her.

Jenelle getting ready for the ceremony.

Jenelle and Sandra anxiously waiting to go onstage.

Our pretty and proud 8th Grade Graduate.
As for her seizures, at the end of last month, we had made many, many changes.  We had our follow up with Dr. Tran at the end of June to discuss the changes.  The addition of Banzel seems to be helping, but still Jenelle seems too drugged.  We decided to wean off of Onfi as it is most sedating.  As the saying goes, one step at a time, so this was the only change in addition to increasing the VNS just a touch.  Dr. Tran mentioned that she was planning to attend a seminar this summer about using the VNS Aspire as a solo for treatment of Lennox Gastaut Syndrome, so she was hoping to bring back some new information for Jenelle.  We scheduled our next appointment for August.

July/August 2017

Summer is always challenging for Jenelle because of the changes in her daily routine.  School is different because ESY (extended school year) extends her special education through the end of July.  She has more time at home as summer school ends at noon. And lots of changes in care givers.  Needless to say, Jenelle can get a little cranky.

We saw better seizure improvement over the weeks and when our follow up with Dr. Tran happened on August 18, we were at our best seizure control yet.  Dr. Tran had presented Jenelle's file at her conference and returned with a new plan on appropriate settings for her VNS.  Finally, before school starts she was finally doing better.  So well in fact, we weaned Jenelle off Ethosuxamide!  Two drugs gone in one summer!  As a result, we have our little girl back.  She is more alert, more vocal and stronger over all.  We are still seeing daily seizures, but nothing like we were seeing in May and June.  It's encouraging.

4th of July with Nana!

4th of July with Grandma!
Jenelle started high school at Tustin High School on August 22 and has been doing as well as expected with the changes.  A little cranky, but well overall.  Both Jenelle and Jack are very busy, and it's challenging with both at different high schools.

First day of school 2017  - our Freshman (Jenelle), Sophomore (nephew Trevor) and Junior (JD)
September 2017

Two kids, two separate schools.  Jenelle is a Tustin Tiller, and JD is a Foothill Knight.  On the day of the cross-town rivalry football game, the Tillers won the game.  I told JD that Jenelle had bragging rights for the rest of the year, and he responded with "Good thing she can't talk!"

After the cross-town game. 

We also added a new kitten to our family.  Currently, her name is Bow (as in Rainbow) but the boys (Brett and JD) are trying to come up with a new name.  I affectionately call her "itty bitty" and it seems to stick.  Jenelle enjoys watching our newest pet run around at full speed, and our 11 year old Slider is getting used to her as well.
Picking up itty bitty Bow from the adoption event.

Bow introducing herself to Jenelle who
isn't too pleased.

Jenelle is scheduled to see Dr. Tran again in October, and so far so good with the medications and VNS settings.  In a few weeks, Jenelle will be 15.  That is 3 times her life expectancy.  Can't imagine life without her.  "Got along without you before I met you, couldn't get along without you now!"

So that is the latest.  Thank you for your continued thoughts and prayers.  I will continue to keep you posted.

Thursday, May 04, 2017

May Video EEG Update

So, we've been fighting new seizures with Jenelle and unfortunately, things have not improved.  On Monday, Jenelle was admitted to CHOC for another Video EEG - we got home on Wednesday.

We gained a lot of information from Jenelle’s latest EEG; mainly that Jenelle is having a lot of seizures.  In fact, not just one seizure type, but three different types of seizures.  Basically we confirmed her seizures are getting worse, and while we still have options, those options are growing slim.

Lennox Gastaut Syndrome (LGS) is characterized when the patient has multiple different types of uncontrolled seizures.  For Jenelle, her LGS presents with mainly tonic and absence seizures.  A known fact with LGS is as the patient reaches their teens, the seizures get very, very difficult to control.  While Jenelle’s seizures seem to be getting worse, it may simply be the nature of her epilepsy condition.

Here is what we learned this week:

1.       The seizure where her eyebrows twitch ( the “Groucho Marx” seizures) are not complex partial seizures like we thought, but actually “atypical absence” seizures.  No matter what we name it, it is still a seizure.  This seizure responds well to the Aspire Vagus Nerve Stimulator (VNS) and is not a real emergency for Jenelle unless it goes over 15 minutes.

Last Thursday, before our admission, Jenelle has a 10 minute atypical absence seizure.  We used Diastat at 8 minutes, and called 911 for a ride to CHOC Emergency.  Her VNS magnet did not stop the seizure, and it was the first time in over a year we had to use Diastat.  While we could have waited 15 minutes, we didn't as it had been a while since we were unable to stop a seizure.  The ER reported that Jenelle was hypoglycemic, but our neurologist said that probably had little to do in bringing on her seizure and more likely due to her having not eaten.  So, blood sugar counts are not really something we will need to monitor.

2.       Jenelle is still having “Tonic” seizures (the new one) but they are shorter due to the VNS self activating with the increase in heart rate.

3.       Jenelle is now having “epileptic spasms”, which look like she is doing a tummy crunch, then her arms stretch out and she drops her head.  Same as the seizures above, this is not an emergency unless it goes longer than 15 minutes. This seizure is similar to the Infantile Spasms, which was Jenelle's diagnosis as a baby.  These seizures come in clusters.  The good news is that the brain wave activity with “epileptic spams” is not as dangerous or as damaging as Infantile Spasms (i.e. no hypsarrythmia).  From our EEG data, Jenelle tends to have clusters of this type of seizure between 4am and 6am.  We had no idea because obviously, we are all asleep when this happens.

What we are doing:

1.       Our Doctor adjusted the settings on Jenelle's VNS to go off even more frequently and at a higher voltage.  This seems to help, but it also means that when we swipe the magnet to activate the VNS on our own during a seizure, we may not get a seizure to stop as the magnet will not activate if the VNS is in a cycle.  And of course, because the automatic cycles are more frequent, the magnet may not always work.  It seems the higher setting is helping, but we really won't know for a few more weeks.

2.       We are decreasing Felbamate.  Jenelle's latest labs showed that she was on too high a dosage, so we are back to 900 mg, three times a day.

3.       We are increasing Ethosuxamide as it seems the atypical absence seizures returned when we lowered the dosage a month ago.

4.       We’ve added a new drug (but not new to Jenelle) called Banzel.  Jenelle was on this drug a few years ago under the supervision of Dr. Shields.  We stopped it because of insomnia, but felt we need to give it another try to see if it can work in conjunction with Felbamate.  She will be on the theraputic dose in four weeks, so we will know more at our next visit.

The doctor wants to see her again at the end of the month, and is going to watch her closely. The EEG confirmed that there is a huge difference in stopping the seizures when using the VNS magnet, so that is definitely helping.

Bottom line, Jenelle’s seizures are getting worse, and we are trying to control them.  If Banzel doesn't work with the new cocktail, our next drug to try is Fycompa.  Dr. Tran has only used that drug twice, but had very bad behavior side effects with her patients.  Because Jenelle is already on a high dose of Felbamate (and Felbamate is also know for bad behavior side effects) we thought Banzel was the better choice for now.  After that, unless something new is discovered, we are really out of drug options.

Our next choice is medical cannabis, or brain surgery (corpus callosotomy).   If I had a nickel for every time someone asks if we've tried marijuana; I'd be a billionaire! :)  We are not against it in any way, but it still is not FDA approved, and it can be very, very expensive.  When it comes down to the choice between medical marijuana or surgery, we'll try the medical marijuana.  With our luck, when we reach that point there may be studies and/or government approval to help us out.  The Laws are always changing!  It is something to think about down the road, and we realize that we are getting close to making it a reality.

So, overall - it’s not really news we were hoping to hear.  But we've always known that Jenelle is very complex and this is just the nature of her epilepsy.  We realize Jenelle will never be seizure free, but we are committed to doing everything possible to make her quality of life the best it can be.

Thank you again for all the prayers.  As always, I'll keep you posted.