Monday, February 24, 2014

Seizures and HB105

For those who don't think a minute is very long, try watching, holding your child while they seize.  It's forever.  Forever as you wonder if they're going to start breathing again.  Forever as you sit, helpless really to do anything.  Forever as you wonder if this going to happen again and again, and AGAIN in the next hour, two hours, day.

I admit, my personal experience is limited to say the least.  Aaron has experienced three seizures in his life, all within a 24 hour period.  The first, I didn't even recognize as a seizure.  I was that uneducated.  I thought he was trying to cough, over and over and over (yeah, pretty oblivious).  BUT his oxygen needs went from one liter to 8.5 in a matter of minutes, and stayed there for an hour.  Guess what?  We landed at Primary's ER.

While there, he had another one, this one witnessed by a fabulous respiratory therapist who recognized it, pointed it out to me, and watched.  Again, the seizing itself only lasted a very short time, short enough that there was no doctor to see.  But it was enough to send him to the PICU instead of the floor. 

His third was in the middle of the night.  Again, there was only a nurse and a resident, no attending, and after effects didn't show up on an EEG, so it was called, "suspected seizure activity."  And I was educated in protocol if it happened at home.  Because it wasn't "officially" diagnosed, we weren't given rescue meds.  Instead, I was told to make sure we supported his breathing with extra oxygen and bagging if needed, and to start a clock.  If after five minutes he was still seizing, we were to call 911.  Yeah, the paramedics.  Because at that point if he hadn't stopped, he would probably need medication to stop it.

Here's the kicker.  While there are meds to stop/help stop seizures, they don't always work.  And there are some awful side effects to them.  And they don't work for everyone.  Right now there's a bill before the Utah State Legislature called House Bill 105, or HB105.  This seeks to legalize an extract from marijuana that has shown in many cases to reduce or even eliminate seizures.  However, some are opposed to it because it might lead to a "slippery slope."  I wish they would educate themselves.  This extract would have less than 0.3% of TCH, the chemical that causes the high.  Remember junior high math?  That percent sign?  That is an infinitesimal amount.  Ain't nobody going to be getting high off that.

And let's put a face on this disorder.  Remember, my son has only had three in his life.  Many of my friends' children are very different.  One is Jeremiah.  This is shared with his mother's permission.

Jeremiah is a bright, happy boy who has Lennox-Gastaut Syndrome, a rare and severe form of childhood-onset epilepsy.  Up until age 2 1/2, he was a normal little boy, learning and developing like other children.  Then his seizures started.  As they progressed, he got to the point where he had over 300 per DAY.  That averages out to over 12 per hour, or one every five minutes. And the result is that he has now regressed to where he has become largely non-verbal, and dependent again on diapers and bottles.  He is now stuck at about two years old, but in an eight-year-old body.

Last weekend, he ended up at Primary's after seizing for much too long in spite of rescue meds.  Once he finally stopped seizing, he slept for over 24 hours.  These are his mom's words once he woke up:
After 25 1/2 hours of slumber, he woke up.  He had a seizure immediately and after it stopped he restarted.  Then it stopped and restarted immediately again.  It lasted 1 1/2 hours.  They gave him Ativan, again with no result.  They gave him another loading dose of fosphenytoin.  It gave him relief for about a half hour and he has started seizing again. The first time he has talked to me since Sunday and he says "mommy help me".
After this, there was only one more med they could try, and if that didn't work, they were going to take him to the ICU and put him in a medical coma.  Yeah, last resort to controlling the seizure.  And while the med they used did control them, it essentially was a coma.  He slept for six days straight, minus that time he woke to plea with Mommy to help him.  He was so sedated that he didn't even respond to painful stimuli. He is still in the hospital with no end in sight, except for the plan to add two more medications to his regimen that struggles to keep him alive.

HE is the kind of child that HB105 is trying to help.  His parents, and many, many more want their children to have this option.  The same chance that other children have had in states where the drug has been legalized, or those that have moved to those states for that purpose.  No one here is asking to legalize marijuana.  What they want is the extract that can give their children back their lives.

These parents want for their children the benefit that Charlotte, a 5 year old in Colorado, received.  She went from having 300 seizures a week (that's a lot of "forever") to being seizure FREE for a week after a single dose of the extract  

And in case you don't know, seizures aren't just an inconvenience, a bother.  When the brain misfires, it's life-threatening.  It damages the brain, and eventually it kills.  And some of these kids suffer hundreds of seizures a day.  So be grateful for your child, and help another one out.  Make sure your legislator knows that this isn't a gateway to legalizing a drug.  Rather it's a way to save a life, maybe even that of someone you know.

For more on this, you can read an excellent article in the Salt Lake Tribune. 
It has been publicly endorsed by three pediatric neurologists the U.  Yeah, doctors, who want it.
Even BYU has gotten on board with an article about it, and some of the kids it stands to benefit.
Also, there's a facebook page:  Hope 4 Children with Epilepsy
Another article in the Standard Examiner 

And by the way, when you stop to think about it, many, many of the medications we rely on for pain relief and other helps are also illegal if not prescribed.  But somehow, that doesn't stop doctors from prescribing them for those that need them.  And if you've ever had surgery or other challenges, aren't you glad?  Let's help out these families, these children, these precious souls.

It is easy to get a thousand prescriptions but hard to get one single remedy.  
~Chinese Proverb

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