A Time to Clap

We had the court hearing for Savannah's Conservatorship petition today and I'm happy to report I can now add Conservator to my list of titles.  Hmmm, let's see, how many titles are there now?  There's
Mom (I like that one), Doctor (nobody really calls me that, and even if they did, I wouldn't know who they were talking to), and Wife (I prefer goddess.  Got that hubby?).

And for Savannah I'm her:
Teacher
Nurse
EMT
Pharmacist
Advocate
Lawyer
Personal assistant
Gopher
Chef
Maid
Mule
And now Conservator

I'm sure I'm missing some there but I was started to overwhelm myself.  Maybe I can come up with an acronym for all that?  I'm her TNEPALPGCMMC  Okay, maybe not.

The hearing was short and sweet.  The judge had a few questions and then granted the conservatorship.  At the end, he said "okay then, thank you everyone, good luck parents." I liked this comment.  Good luck.  I think our luck is long gone as evidenced by our appearance here in court today Judge-man.  Still, an appropriate thing to say as we venture out into the world to take care of this child . . . I mean adult.  Then he said "dismissed," and Savannah started clapping.  The previously stoic, all-business Judge cracked a smile as we walked out of court.  As always, Savannah smiles despite epilepsy.  And she makes the rest of us smile too.

You've Been Served

     When your child turns 18, most people think about things like "hey, you're an adult now" and "have you registered to vote" and "why don't you get a job".   But not us.  That would be way too conventional.  No, we get to think about something called a Conservatorship.  If you're not familiar with this loaded little word, let me acquaint you.
     A Conservatorship is the process where you either get to pay a Lawyer lots-o-money to draft exactly 56 legal documents for you (or if you don't have lots-o-money, you get to figure out how to fill out these documents yourself in a painstaking process that involves at least 5 pounds of weight gain due to stress eating).  The purpose of these exactly 56 legal documents is to, without sugar-coating it at all, take away Savannah's rights and give them to someone of "normal" IQ (namely us, her parents, although the IQ thing might be debatable), in an effort to protect her from being taken advantage of by the slime balls of the world.  The seven rights being taken from her include the right to sign a contact, to consent to marry, to choose her residence, to keep her private records private, to consent to sex (betcha didn't know that was a right that could be taken away from you, huh?) and stuff like that.  If that doesn't say Happy 18th Birthday, you're an adult now, then I don't know what does!
     So as you can imagine, having to file for Conservatorship is about as much fun as dental work and IRS audits.  And all kidding aside, it represents just one more blow delivered to us by the scourge that is epilepsy.  'You're daughter lived to be 18, yay'.  'Now you get to take away her rights'.  I feel like one of those inflatable punching bags they sell for kids that you punch and they pop back upright.  Epilepsy throws the punches, and we pop back upright . . . eventually.  Thank goodness we have Savannah in all of this or we'd be insane.
     In the process of filing for Conservatorship, Savannah had to be served with the court paperwork in case she wanted to protest.  So we had our good friend Nancy serve Savannah the paperwork.  And in true, beautiful, loving Savannah form, she smiled, hugged Nancy, said thank you, never opened the letter at all, and proceeded to sleep with the letter being hugged tightly in her arms that night.  So as always, I have this great memory of my sweet, sweet daughter that will always overshadow anything sad about the whole Conservatorship process.  She keeps me smiling.  Thanks Savannah.  Now go get a job.  :)

Just Call Me Chippie

Chippie the parakeet never saw it coming. One second he was peacefully perched in his cage. The next he was sucked in, washed up, and blown over.  The problems began when Chippie’s owner decided to clean Chippie’s cage with a vacuum cleaner. She removed the attachment from the end of the hose and stuck it in the cage. The phone rang, and she turned to pick it up. She’d barely said “hello” when “sssopp!” Chippie got sucked in. The bird owner gasped, put down the phone, turned off the vacuum, and opened the bag. There was Chippie – still alive, but stunned. Since the bird was covered with dust and soot, she grabbed him and raced to the bathroom, turned on the faucet, and held Chippie under the running water. Then, realizing that Chippie was soaked and shivering, she did what any compassionate bird owner would do  . . . she reached for the hair dryer and blasted the pet with hot air. Poor Chippie never knew what hit him.  A few days after the trauma, the reporter who’d initially written about the event contacted Chippie’s owner to see how the bird was recovering.  “Well.” She replied, “Chippie doesn’t sing much anymore – he just sits and stares.”  By Max Lucado.

Yeah, epilepsy does that to you.  In fact, it does it to you over and over again with every new seizure.  I’ve been held under more faucets and blasted with more hair dryers than I can remember . . . and I don’t feel much like singing anymore. Thankfully, Savannah sings for the both of us.  Even though she’s the one with epilepsy, it’s almost as if she is blissfully unaware of the smack down we endure because she doesn’t remember the seizures.  And since she doesn’t have the mindset to compare herself to others, she doesn’t really seem to see how epilepsy limits her.  It’s actually kind of beautiful. So at this Thanksgiving time, I am so thankful for my beautiful Savannah.  Her persistent smile, infectious giggle, and unending love allow me to still sing . . .despite epilepsy.  Happy Thanksgiving.  J

Epilepsy True or False

In honor of Epilepsy Awareness Month, a True/False quiz:


1. You can swallow your tongue during a seizure. 
FALSE.  It's physically impossible to swallow your tongue.

2. You should force something into the mouth of someone having a seizure.
FALSE.  Absolutely not! That's a good way to chip teeth, puncture gums, or even break someone's jaw. The correct first aid is simple. Just gently roll the person on one side and put something soft under his head to protect him from getting injured.

3. You should restrain someone having a seizure. 
FALSE AGAIN.  Never use restraint! The seizure will run its course and you cannot stop it.

4. Epilepsy is contagious.
FALSE BABY.  You simply can't catch epilepsy from another person.

5. Only kids get epilepsy.
NEGATIVE.  NEGATIVO,  NEGATORIO.  Epilepsy happens to people over age 65 almost as often as it does to children aged ten and under. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.

6. With today's medication, epilepsy is largely a solved problem.
NOPE.  Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for 1 out of 3 people with epilepsy and there's a critical need for more research.


7. Epilepsy is rare and there aren't many people who have it.
FALSER THAN FALSE.  There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may accompany other conditions affecting the brain, such as cerebral palsy, mental retardation, autism, Alzheimer's, and traumatic brain injury.


8. You can't die from epilepsy.
NOT EVEN CLOSE.  Epilepsy is still a very serious condition and individuals do die from seizures. Experts estimate that prolonged seizures (status epilepticus) are the cause of ~50,000 deaths in the US each year.

9. You can't tell what a person might do during a seizure.
GUESS WHAT?  FALSE.  Seizures commonly take a characteristic form and the individual will do much the same thing during each episode. His behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

10.  Epilepsy sucks.
TRUE.  I had to put one true in here.  ;)

Mission Possible - Kick Epilepsy's Butt!

A few months ago, I testified before the Institute of Medicine about the impact epilepsy has on patients and families.  In preparing for the testimony, I combed through my plethora of medical records and came up with a list of statistics that summarize epilepsy’s impact on our lives specifically.  It was pretty clear that we’ve been getting our butts kicked by epilepsy for quite some time now.  Here’s the testimony: 

Our daughter Savannah was healthy and typically developing until age 2.  Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging.  We didn’t know she was seizing.  We thought she was choking.  Doctors called her seizures attacks and spells, but never seizures, and we were repeatedly told she would “outgrow them”.  Savannah is now 17 and seizes daily.  She is intellectually disabled from the seizures and will never be independent.  Here is a snapshot of 15-years of epilepsy from a surveillance standpoint. 

Medical:

Seizures to date - 27,949.  Savannah’s has yet to outgrow them.

Years before diagnosis - 3

Neurologists we saw before diagnosis - 7

Epilepsy treatments tried to date - 26

Treatments that have stopped her seizures – 0

Cause of her epilepsy - unknown

Financial:

Monthly cost of Savannah’s current 5-drug regimen - $1,640 (excluding Diastat)

Times she needed emergency rectal medication (Diastat) to stop her seizures last month - 7

Cost of one Diastat - $183  ($183 x 7 = $1281)

Epilepsy-related hospitalizations (including 3 surgeries) - 11

Cost of Savannah’s last hospital stay - $53,475

Life:

Days of school she’s missed so far this year – 43 (out of 121 days)

Years she’s had an IEP - 12

Years we’ve had to fiercely advocate for an appropriate education under that IEP - 12

Time in a day that Savannah can be left unattended - 0.  This includes showering and toileting.

Family:

Times I was late to work last week because of seizures - 2.  This is common.

Times my husband and I have been on the brink of divorce because of epilepsy - 3

Times I’ve been clinically depressed since her diagnosis and needed treatment - 5

And then there are the factors we can’t quantify:

Times we’ve had to cancel an outing or because of seizures - ???

Years Savannah will live before the seizures kill her - ???

As a family living these statistics, what do we need?  In the early years, we needed:

-To be told she had epilepsy.  Tiptoeing around the diagnosis robbed us of precious time.

-We needed the facts – like the fact that ~36% of people with epilepsy don’t respond to treatment.  We lost a great deal of trust in doctors because of their choice to censor.

-We needed to know that seizures could manifest in ways other than tonic-clonics.  We unknowingly stood by as Savannah had subtle seizures for hours in the early years.

-We needed support!  Greif counseling would have shown me I wasn’t losing my sanity in those early years – I was grieving.  Introductions to other families would have helped us feel like we weren’t alone.  And a general public awareness of epilepsy would have been useful.  The last thing you need is to see when your child is seizing in the middle of the soccer field is parents shielding their child as if your child is contagious or offensive. 

What do we need today? 

-We need to know the cause of her epilepsy.  Why do we treat the seizures and not the cause???  We need to move away from this dogma.

-We need to bring down her medical costs.  Were drowning.

-We need doctors and teachers that won’t give up

-And we need help.  And I’m not just Savannah’s Mother but I’ve also had become her Doctor, Pharmacist, EMT, Lawyer, Teacher and Advocate.  No one person or family can do all of this.

Please.  Please.  Help.

Thank you

     Yeah, I think it’s safe to say we’ve had our tail ends handed to us by epilepsy for 15 years now.  But I refuse to just sit back and take it.  I’m always looking for ways to kick a little epilepsy fanny myself.  And last week, I saw the most beautiful display of epilepsy ass kicking I had ever seen.  It was when Savannah was invited to the high school homecoming dance by a wonderful, kind, handsome, football playing, popular, fun-loving, general ed teen from her school.  At first I was skeptical.  Who is this boy?  What’s his deal?  But I soon learned that he’s just a kind kid who doesn’t see Savannah for her limitations and wants her - and all the kids in special ed at her school - to have a great year.  Take that epilepsy! 
     Savannah went to the dance with this fantastic teen.  She danced, she met his many friends, and she grinned uncontrollably for the entire 2 hours that she was able to participate in the loud, pulsating, laser beam-abundant, rap music-dominated dance.  What a beautiful thing to see . . . a whole generation of teens who are kind, accepting, and look at the strengths  in others.  When I was their age, special needs kids were either in an isolated part of campus, or went to an entirely different school.  How things have changed.  And what an opportunity for both Savannah, and the teens that are becoming her friends, to learn from each other.  It was amazing to see.
     This whole experience, apart from making me cry (with joy for a change), reminded me that the way we kick epilepsy’s butt is in the seemingly small things we do.  Maybe we talk about epilepsy to educate others.  Maybe we learn about epilepsy to educate ourselves.  Maybe we donate money.  Maybe we fundraise for a cure.  Maybe we have a blog.  Maybe we campaign for equal rights.  Maybe we inspire others.  Maybe we love someone with epilepsy.  Or maybe we invite a seizure helmet-wearing outsider into the in-crowd.  In the things we do, we are the ones who make a difference in the fight against epilepsy.  And it’s these things that will lead us to a cure someday.  My good friend Jeanne Donalty who amazingly raises money every year for Citizens United for Research in Epilepsy (CURE) www.cureepilepsy.org had this phrase on the program of her recent fundraiser and I love it:

You believe.  You Give.  You are the cure!  

I would add: you are the epilepsy butt-kicker.  So this November, in honor of epilepsy awareness month, I would ask you to join me, Savannah’s new dancing friend, and epilepsy butt kickers around the world, and kick a little epilepsy butt of your own in whatever way you can. You are the cure!

A Blog in Pictures

The medication Savannah takes for epilepsy . . .

The medication Mommy takes for Savannah's epilepsy . . .

'Nuff said.

Opportunity lost, but I won't let it happen again

My daughter Savannah and I sat on the grass near where her brother was having soccer practice.  She had made a friend, a little sister of a boy on the team, and together they sat and played Barbies in the sunshine.  Sitting around us were all the other parents that had come to watch their boys play.  In a split second, without warning (as usual) Savannah’s body stiffened and she was thrust forward, head first, into the grass.  Instinctively, I did what I had done so many times before.  I gently rolled Savannah onto her side and saw what I always saw.  Her face was rigid, and the muscles in her lips and eyelids twitched relentlessly.  Her arms and legs were completely stiff and at the joints, they jerked violently.  She made frothing sounds with her mouth, and blood and saliva rolled down her chin because she had, again, bitten her tongue. 

It was just like the other seizures Savannah had everyday.  Only this time, she had an audience.  And this audience was obviously not a group of people who had ever seen a seizure before.  The little girl next to Savannah became afraid.  She looked to her mother for guidance, and her mother, who was equally terrified, motioned to her.  The girl ran away from Savannah and into her mother’s clutching grasp. The other parents stared at us with their mouths open in bewilderment, and I begin to feel oddly uncomfortable.   Seeing their reaction, I put my back to them and shielded Savannah from their glances.  When her seizure was over, I scooped her up into my arms; calmly told the onlookers the Savannah had had a seizure, and took her home.

Upon reflection, I became angry – at first I was angry with them.  How could they act that way?  It wasn’t Savannah’s fault she had seizures.  And it’s not like it can’t happen to anybody.  But then, I got mad at myself.  I realized that I could have used that ugly situation to educate about 15 people, including one impressionable little girl, about epilepsy.  And I was sad for the opportunity lost. 

Seizures can be ugly - Especially convulsive ones.  They scare people.   But if we are ever going to erase the myths and misconceptions that exist about epilepsy, we’re going to have to let people see seizures, and then explain to them what they are seeing.  If I had it to do over again, I would handle that situation at the park a lot differently.  At least now I’m prepared should it happen again . . . or in our case, when it happens again.


Over 25,000 of these crummy seizures (click to view clip from upcoming documentary being filmed by this great couple)
http://www.youtube.com/watch?v=ieiaLPdja68

And she's still smiling!!!  That-a-girl!!!