Tuesday, November 16, 2021

Something New!

Just wanted to send out a quick update since Jenelle's last overnight video EEG on October 27.  I've been holding off to post this, because I didn't want to jinx it, but Jenelle did not have ANY seizures captured on her last EEG.  None.  First time maybe ever!  As any parent knows, this streak will only last until her next seizure. And slowly, in the last week, she is having drop seizures again... so it's safe to update you now!

Still... we are definitely in new territory.  Dr. Steenari said that the EEG did not capture any seizures (which I figured because I didn't notice any either).  Her brain waves during the day are very clean.  Unfortunately, her brain waves during sleep are pretty chaotic... which doesn't necessarily mean seizures. It just means her brain is very abnormal at night.  Dr. Steenari believes the Fintelpa is helping, but Jenelle is still at a great risk for drop seizures.  She is now recommending we proceed with Corpus Callostomy.

So, here is the thing.  We've been dealing with Jenelle's seizures (and how to stop them) since age 10 months.  This last "no seizure" trend lasted a little over 8 days.  She now has maybe one or two "drops" first thing in the morning.  And those drops can cause serious injury (broken teeth, broken bones, head concussion, etc.)  I always try to explain to everyone... Jenelle will never not have seizures.  It simply won't happen.  What Brett and I have been working towards with all of her medical doctors is her "quality of life."  

Right now, Jenelle is happy, healthy, and content.  We don't see any horrible side effects from her medications (like mood swings, depression, crying fits, self-harm, etc.)  Living her life using medications that have few side effects is a great quality for life for Jenelle.  Sure, the EEG is showing chaotic brain waves at night.  But at night, Jenelle sleeps, is in the safety of her bed and always under our supervision.  What we need to determine is how to best keep her safe during the day.  Will that mean Corpus Callostomy?  Probably.

So I've taken a while to post all of this because like I said, leading up to Jenelle's EEG, and the 8 or so days that followed, we did not see any seizures.  It was kind of weird.  Kind of exciting too.  To think that this new medication (Fintepla) may actually be the drug we've been praying for.  And then slowly, in the last week or so, Jenelle has been having morning head drops.  Sometimes just one.  No more than three.  Considering she was up to 15 to 30 drops a day, this is great improvement.  We're going to give it more time.  She has only been at the therapeutic dose for two weeks.  It can take 6 weeks to really see consistent results.  And she has had a runny nose the past couple of days, so there can be other reasons these drops seizures are happening.  It just takes time.

So for now... we're pretty excited.  Feeling happy, yet cautious.  Let's hope it stays that way.  I'll be sure to keep you posted.