November… Epilepsy Awareness Month

Fact: Although many people do not have a physical experience of an aura, it is still a distinct part of a seizure.

This was a fact from October 30th…

I wonder… Amandya says she doesn’t have auras that she can remember… but she remembers so little surrounding her seizures.  I wonder if she has auras but just doesn’t remember that she had them before or that she has them when she has her seizures.

 

 

SAT Day

It is SAT day.  She got up this morning and was cramming for the test.  She is way stressed but she is actually pretty confident.

She had Peanut Butter sandwich and coffee for breakfast… her blood sugar was 99.

I haven’t been posting much… I’ve been stressing about her a lot.  Here PCP is driving me out of my tree and I am trying very hard to not dwell on what might be happening rather trying to concentrate on what is… Stupid, I know… but it is what it is.

She has just three weeks to go (Feb 11) till she hits her 6 month mark.  She is finding her confidence and is starting to believe that she might actually make it.  It is kind of interesting that her 6 month mark will be just days from her one year mark from when she was diagnosed.  That comes the day after the half marathon.  Hmmm…

What has been up with the squirrel…

Other than thinking about a career in law enforcement and classes at what she hopes will be Penn State… we have been dealing with uncertainty of her blood sugar.  She has been feeling very off a lot of days and her blood sugar levels (we are down to taking them just first thing in the morning most days) are really stupid… which has me stressing.

108
108
136
138
161
99

This is normal?  According to the PCP it is nothing to worry about because we TOTALLY OBVIOUSLY got an incredibly sucky meter that TOTALLY is always wrong and is always apparently randomly wrong… not just off compared to their numbers… it just makes them up as it goes.

Of course their HIGH QUALITY meters took 11 pokes to get ANY reading and one of them never would read anything… but ours sucks.  Totally?  Really?  Really Really?  Lord.

I will be glad to get into the ENDO mid February (more ominous things?  Makes you think) to see what might be going on.  I can’t believe that “it is nothing” is a DOCTOR’S answer when a reading is 247.  Even if the meter reads higher than theirs and even if it isn’t perfect, I would say it still trends reasonably accurate to itself and that is a number to make you think… coupled with the fact that when her numbers are high she feels crappy even before we take the levels….

So you see it has been a frustrating few weeks…

But today is a good day.  A positive day.  She is taking the SATs and she is starting to look forward to life.  This is a good thing.

Be A Hero for Someone With Epilepsy

BE someone’s Hero!!!

We Have To Find A Way For This To End

I have been incredibly pre-occupied with Amandya and our latest drama (which I probably ought to start to chronicle here too… )… her blood sugar has started to weird out… and I have been distracted from paying attention to the world around me.  This morning, thanks to Facebook friends (Amandya makes fun of me because I have so many friends I have never met… but I have some incredible friends that I just… have never seen in person) I was reading this post this morning…

A DAY IN THE LIFE OF EPILEPSY

http://www.epilepsywarriors.org/blog.html

Yes, I completely understand that some people think that… It’s only fits, get over it and live with it.  I understand that this is one of MY flags and it isn’t one of everyone’s flags to wave.

But he was THREE YEARS OLD.  Three…

I can only imagine what this family is going through this new year…

We have to find a way to stop this.

I know Epilepsy isn’t popular.  It isn’t one of the glamorous diseases.

Susan… I’m grabbing this paragraph from your blog because it is very eloquent…

Epilepsy is the least funded disease in the country more than any other illness and that is just TOTALLY UN-ACCEPTABLE in my book. 50,000 people die from Epilepsy each year and that is more than most of the worst kinds of CANCER combined again I ask WHAT IS WRONG WITH THAT PICTURE!!!! It’s time we took a stand and really start spreading the word and awareness that this is serious and that unless we do something to get the necessary funding and FIND A CURE we are going to continue as Parents burying Children.

FIFTY THOUSAND PEOPLE die every year from Epilepsy.  That is equal to HALF the town I live in now.  That is FIVE TIMES the size of the town I grew up in… EVERY YEAR.

You can FIND YOUR CONGRESS PEOPLE here (go ahead, click it, it will open in a different window or tab).  You click your state… enter your zip code and click a button… it took me to a email form letter page you can fill in with my concerns.  It works best if you know your 9 digit zip code.  If you don’t… it takes you to a place where you can find it then go back and enter it in… Email… it will cost you TEN minutes of your time… not a dime other than what you are already paying to be on whatever computer you are on anyway (the gas to the library… the internet charge… the phone bill on your smart phone…whatever… not thing extra.

Contacting Congress is another Site to get to the same Congress people

Congress.org gives you not only information on your Congress person (based on your address) but also contact information to the Congressional Leaders (for both the Senate and the House)

Senators can be found on United States Senate page… many of them have direct links to their web forms to fill out the information you want them to have.

LET THESE PEOPLE KNOW we need to fund epilepsy research.  We can not continue to let our children die NO MATTER HOW OLD our children are.  Too many people have uncontrolled seizures.  Too many people are dying as a result of their epilepsy

It will take each person maybe an hour… and if you have to actually write a physical letter, it will take less than $2 to send the letters.

This matters.

Everyone Needs a Little Support

Round Rock is a city of 105,412 (roughly, as of 2009)
Georgetown has 50,885
Our local support group said that all three of the families who come to the local meetings (local as in 35 miles away) are pretty locked into their group.  that is wonderful.  they found a place that fits…
okay.. but if you do the math, I’m pretty sure that there are a few more people in the area who MIGHT actually have family members who have epilepsy or who have epilepsy in their family… a few more than the three people who are tied to the support group 35 miles away.  I understand that a group that has the support of the really big fancy hospital is great and that people from MILES away come there… but with gas back to nearly $3 a gallon and time more and more precious to some of us who would rather spend the time with our peeps rather than commuting to a place where peeps meet… I would think that maybe a closer alternative might be welcome.
Did you know that epilepsy isn’t picky about who it affects.  There are actually people who don’t have access to reliable transportation to get them to the Children’s Hospital and back once a month even if it means meeting with people who understand and who can relate.  Even if it means Pizza and Coffee and Pop.  I make the drive every blessed day to work and back and I don’t WANT to turn around after I go home to pick up my daughter (who is the most effected by seizures since she is the one who has epilepsy) and drive the whole way back into town to meet with people no matter how understanding those people are… no matter the number of impressive experts they have (duh… they are AT the hospital) willing to talk.
Frustrated?  yeah, just a little.
So here I am.
I know that I can not create a 5k single handed… I have found entirely too many roadblocks with that.  And as the economy gets worse, fewer people are willing to cough up money to help.  Maybe i will be able to help with the 5k that they might possibly maybe be planning for may not too far away.  Which is good and which I look forward to… to being in or helping with or whatever I can do to make epilepsy more understood.
In the mean time… I am here, frustrated because people don’t get it… don’t understand… don’t realize…
So… here I am… looking for venues for meetings. And I’m looking for sponsors to help with the snacks… and speakers…
I am going to find a way to give local people who can’t get to the established meetings an alternative… a way to meet with people who share their concerns.  A way to feel like they matter too.

Danny Did…

We are sitting at the 122 day mark.  The treasured driving school prize is actually starting to feel like it might happen.  It is the holiday season and we made it home to Pennsylvania for Thanksgiving without any kidney stone issues or any seizures.  It was a Thanksgiving to treasure for so many reasons.

Since we have been home, I have been participating in Kaitlin’s Cauze’s trivia contest.  Frankly it has been keeping me sane through my own personal insanity the last week or so.  Kaitlin is one awesome little girl… young woman… advocate.  When I grow up, I want to be just like her.  Right now, stuff (crap, expletive, live, whatever) seems to be stepping between me and what I know in my heart I need to be doing… and it is irritating to me.

Through this trivia contest, I have been learning so much about so many wonderful people who are somewhere along the same road that we are on.  I have been able to help at least on family at least a little bit.  One little boy I learned about in all of this trivia adventure is Danny and the Danny Did foundation.

Danny Stanton died one year ago tomorrow from a seizure that happened while he was sleeping (SUDEP).  He was four years old.  His family started the Danny Did Foundation to help prevent seizure related deaths… which ultimately means the cure for epilepsy because that is really the only way to forever stop it from happening.

So far, Amandya has only had seizures in the middle of the afternoon so I have not ever faced the fear of a night time seizure.  Danny’s only occurred at night.

Danny, with his beautifully open smile, DID enjoy his life…

Danny Did Enjoy His Life.  Go and Live and ENJOY yours.

Nike and Mariann, my heart goes out to you.  I applaud you and know that Danny touches more lives that you could ever realize.

On Limitations…

Why is it that people think people with epilepsy need to limit what they do to such a great extent?  Good grief… Florence Griffith-Joyner (Flo-Jo) had epilepsy and she was arguably the fastest woman of all time and an Olympic athlete.  That pretty much means that running may not be one of somebody’s triggers… it might, and that doesn’t discount the need to know for sure… but if someone has been running seizure free for months after diagnosis you can probably rest assured that running in a race probably isn’t going to cause issues.

Sometimes epilepsy does accompany other conditions that may limit what someone an do but it usually isn’t the epilepsy that is the limiting factor.

You can swim… if you take obvious precautions of having someone there with you to make sure you are safe if you get into trouble.  DUH… that is what you are SUPPOSED to do anyway.

You can drive a car if your seizures are controlled for a long enough period of time.

You can hold a job… pretty much any job anyone else can hold.  There are exceptions… you can work FOR the military in a civilian position but you can’t be IN the military… this is a situation Amandya is determined to find a way to rectify.

You can ride a horse or climb a mountain or have babies or start their own company or fly a kite or give you a hug (if they will admit that on occasion hugging is ok… grrr… how did I SO get a not huggy kind of kid?).  They can walk the dog and be wonderful leaders.

You know… I see so much prejudice everywhere… There are people who think I’m funny with all of the flags that I have waving them… but you know… stupidity is stupidity and it needs to be stamped out with really big really heavy boots.  There are so many things that do limit what I can do (my chances of climbing Mt Everest are pretty slim between my RA and my asthma…) but I won’t let other people put limitations on ANYTHING that I do or Amandya does or Adam does or anyone I care about.

I guess being “In Your Face” is okay as long as I don’t step on your rights, either or limit what you are able to do.

 

Your First Brush With a Seizure

A friend from up north contacted me in the last couple days.  Her cousin’s 11 year old daughter has suddenly started having seizures.  Friday she had one, this morning another.  They are currently at the hospital.

Now… I’m sitting here thinking of all of the emotions and thoughts that I know have to be going through their minds.  And it occurred to me that there are probably a lot of people out there in the same boat… or a similar one… going through a lot of the same things.

Your first brush with a seizure isn’t necessarily anything to panic over.  Lots of perfectly healthy people have a seizure in their lifetime and it doesn’t mean anything and it doesn’t lead to a diagnosis of epilepsy.  That is what they told us when Amandya had her first episode.

She was in the school parking lot after school.  I don’t have many details about what happened.  I only got it second and third hand from the police officer and the EMTs who were there for her.

At the hospital that first time they did a CAT scan and blood work and a urine test and made sure that she was coherent and “ok” before they let her go.  We got our one “get out of jail free” card  (that was the way the nurse at the ER phrased it) and told that it would probably be good to at least follow up with our PCP the next day.  She, naturally, suggested that we follow up with a neurologist… who told us that it was probably low blood sugar, lack of eating… low blood pressure… whatever and it REALLY was probably just a fainting spell.

It wasn’t

But it was good for a little while to have a false sense of well being.

It lasted 4 weeks

The next seizure was actually 2 seizures within 3 hours of each other… the first one we went to the ER (no one told us that wasn’t where they wanted us right then).  They discharged us telling us to follow up with the neurologist the next week… we got a mile down the road and she seized again in the car.

U-turn (how we didn’t hit something I will NEVER know)… back to ER… back to the same room and same bed that hadn’t even been stripped yet.  Poof… ambulance was called and we were on our way to children’s hospital.  She was pumped full of anti-seizure medicine and slept until the mext morning (14… 16 hours).  We had EEG and MRI and lots of doctors visiting the room.

We came out two days later with a diagnosis of epilepsy, a prescription for diastat and keppra, and a lot of questions… a lot of fears… a lot of uncertainty.

Yes, it is scary (especially if you have tonic clonic seizures… what people have called grand mal seizures… but any seizure can be).  When you start to think of all of the changes that you might have to face, it gets even scarier.  But there are a lot of people in the same or similar boat as you are.

No, you are not alone.  You might feel like it, but you aren’t.  There are a lot of us out here that are in or have been in your shoes.  Ask questions.  Reach out.

No, you can’t run away and hide under a bridge or a rock or a really pretty tree.  Running away won’t change where you are or what you have to suddenly deal with.

No, there is nothing magic that will suddenly make all of this go away.  Believe me, I’ve tried.  The adventure you are now on will maybe be long, will hopefully be short (the “getting to controlled” adventure) and will be extremely stressful.

Yes, I know that isn’t the answers you really wanted.

Make friends with the staff at your neurologist’s office.  They will be the ones you have to deal with extensively for quite a while.

Be careful of bath tubs, hot tubs and swimming pools.  It isn’t a great thing to be diagnosed when you are going through your “I’m trying to be independent” or “I am independent” parts of your life, but until you/your loved one… whatever… are controlled or at least semi predictable, your life has definitely changed for some period of time.

This is not medical advice.  I am not a doctor.  I don’t pretend to be on on TV.  I’m a mom.  I’m still just as scared (almost every day) as you are.  I just don’t show it quite as often.

If I can do this, you can do this…. One day, one hour, one minute, one second at a time.

Epilepsy Facts…

Fact: Almost 500 new cases of epilepsy are diagnosed every day in the United States and an estimated 2 million new cases occur each year globally… you are not alone

Fact: 85% of the 50 million people who have epilepsy today live in developing countries

Fact: Epilepsy is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined- yet remains the LEAST funded.

Fact: Epilepsy is an equal opportunity condition. It can touch anyone’s life.

The Impact of Epilepsy

Seizures affect the people who are having seizures and their friends and family, simply because they are seizures…but what really is the impact of epilepsy.

Think about it… how did you get to wherever you needed to go today?  Did you drive?  If you have been diagnosed with epilepsy you cannot drive until your seizures have been regulated and you are seizure free for SIX months.  If you have been diagnosed at age 15 that can be devastating news… just when all of your friends are starting to drive… you are sidelined and that makes you <ghasp> different.  Being different isn’t great when you are a teenager.

But what if you are thirty and you get diagnosed?  What happens to your life then?  You can’t drive yourself to work… or the doctor… or church… or to get groceries… or the hospital…

You can’t take your kids/spouse/partner to work/school/the movies/out to dinner.

Like to swim?

Enjoy soaking in a hot bath?

Guess what… it is dangerous, if your seizures aren’t controlled (and you still have to be extra careful if they are… more careful than it you don’t have seizures) going for a swim or taking a bath… I know… Amandya seized in the pool.  Fortunately people who “have her back” were there with her.  Even if your pool has a lifeguard (which ours doesn’t) you can’t be SURE they will see in time… or know what to do.

Do you have to cross busy streets?  Crossing the street  (particularly when you are newly diagnosed and you aren’t sure your seizures are controlled (and sometimes even when they are) can be scary.  It can be just as scary when you are thinking about someone you love crossing the street and wondering what would happen if they seized in the middle of the street… would cars even stop…

Did you serve in the military?  Do you want to?  Not with an epilepsy diagnosis, even if you are controlled.

Want to be a tour guide in Washington DC?  Until recently, that was off limits as an occupation, too.

The impact of an epilepsy diagnosis is far more reaching that just the immediate impact of… I have epilepsy and I have to get some control over my life… the impacts are far wider than many people realize.

That is why getting an understanding (and having more people have an understanding) of what is going on matters.  That’s why it matters that you have a support system that you can rely on… and not just for the immediate and obvious needs… I’m coming to realize more and more what it means to someone to have a cheerleader in the wings being in your face support and advocate.

Epilepsy touches everyone… in some way… even if you don’t know it.

educate yourself.

don’t be afraid to reach out and take someone’s hand and let them know that if they need you you are there.

one in a hundred people on average have epilepsy.

that means at least 5 people in the company where I work have epilepsy.
that means the elementary school in my neighborhood… the one that I pass every morning has at least one to 2 kids in each grade that have epilepsy.
that means my daughter attends school with at least 30 people who have epilepsy
that means my son attends school with at least three hundred people that have epilepsy.