Purple Day… Awareness…

purple day

It’s purple day again… March 26th… Epilepsy Awareness…

 

A day to reflect… a day to look forward in hope… a day to help raise awareness of such a misunderstood condition…

 

You can’t swallow your tongue during a seizure. It’s physically impossible.

You should NEVER force something into the mouth of someone having a seizure. Absolutely not! Forcing something into the mouth of someone having a seizure is a good way to chip teeth, cut gums, or even break someone’s jaw. The correct first aid is simple. Just gently roll the person on one side, support their head, protect from injury, and make sure their breathing is okay.

DON’T restrain someone having a seizure. Most seizures end in seconds or a few minutes and will end on their own. You can protect the person from injury by following simple first-aid guidelines.

Epilepsy is NOT contagious. You simply can’t catch epilepsy from another person.

Anyone can develop epilepsy. Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.

Most people with epilepsy CAN DO the same things that people without epilepsy can do. However, some people with frequent seizures may not be able to work, drive, or may have problems in other parts of their life.

People with epilepsy CAN handle jobs with responsibility and stress. People with seizure disorders are found in all walks of life. They may work in business, government, the arts and all sorts of professions. If stress bothers their seizures, they may need to learn ways to manage stress at work. But everyone needs to learn how to cope with stress! There may be some types of jobs that people with epilepsy can’t do because of possible safety problems. Otherwise, having epilepsy should not affect the type of job or responsibility that a person has.

Even with today’s medication, epilepsy CANNOT be cured.

Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn’t work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure.

Epilepsy is NOT rare. 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 be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer’s, and traumatic brain injury.

You CAN die from epilepsy. While death in epilepsy doesn’t happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is SUDEP or Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the US each year occur from these seizure emergencies.

What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

People with epilepsy are usually not physically limited in what they can do. During and after a seizure, a person may have trouble moving or doing their usual activity. Some people may have trouble with physical abilities due to other neurological problems. Aside from these problems, a person who is not having a seizure is usually not limited in what they can do physically.

<http://www.epilepsy.com/learn/epilepsy-101/facts-about-seizures-and-epilepsy&gt;

 

Four years have passed since we have joined the not so exclusive club.  Four years realizing that there are still so many ways that misinformation exists… so many ways that more glamorous conditions are funded and information is given out.  Four years since Adam found my little girl laying on the floor at the bottom of the stairs (thank goodness she was sitting three steps up) in a tonic clonic seizure.  We have come a long way in four years… but we really haven’t.  I look at my babies with pride but I know that it is a specter that will shadow them forever.

 

Holding the proclamation

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The Saga Continues…

So… it has been an amazingly long and awful week.  I feel like I got hit by a truck, physically, from the stress.  I feel like I’ve been beaten up by a rabid baboon with a baseball bad in one hand and a taser in the other hand.  I’m ready for the baboon to quit.

In the awfulness (well, that word isn’t a good word, but it did pass spell check so I guess it IS a word) of the week, the news that I was right and that we now are the proud owners of two kids (neither actually “kids” any more) who have epilepsy.  Adam’s been having seizures that no one realized were seizures for years.  I feel like a horrible parent.  I didn’t need help feeling like a horrible parent this week… but I will be fine.

Adam has been having these…

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

His Tonic Clonic seizure from just before Christmas was the impetus to go see the neurologist.  I’m worried that this may be getting worse.  I’m worried that it will get worse.  He doesn’t think he wants to medicate the myoclonic seizures away.  He has been having them for so long (years and years… even his pediatric neurologist blew them off as nothing so I guess I shouldn’t beat myself up too much… but years and years and I didn’t help him be fixed).

In the next few weeks, he will have his brain MRI and his 20 hour EEG.  I didn’t realize that they would hook him up in the doctor’s office to the wires and have a monitor hooked up to him to gather all of the information for almost a whole day.  A month from tomorrow we will go back to the doctor to find out what all of his findings are.  Depending on what he finds, there may or may not be more tests.

If you see a pattern of  ‘twitches’ that include arm jerks and neck jerks but that occur when you are having a perfectly normal conversation or just at random times (not when they are falling asleep, that happens to most of us)… pay attention and push people to pay attention too!!!

Yes, I will be fine.  Yes, I will eventually stop beating myself up over everything.

For now, it is who I am and what I do… and I’m trying to deal with having to broken kids who I feel like I’ve let down…

Lights And Sirens…

I was driving into work yesterday and I passed several places where police cars were pulled over at broken down cars, accidents and/or speeders (not likely given it was rush hour… but maybe) and I noticed the light bars and their patterns and activities.  It dawned on me that (duh) we don’t have the bubble spinny lights on police cars any more.  We have computerized light bars.  They are totally cool and awesome if you are one of those INSIDE the car.

I understand that innocent bystanders (we serve and protect… ) probably don’t matter a whole lot and if you are not controlled in your seizures you aren’t supposed to be driving… but.. you know… there are passengers in cars driving past that people also in the cars care about… people who might be sensitive to the flashes…

There are pedestrians who are walking along the road or on the sidewalk who could seize and end up in the street.

It isn’t that I long for the good ole days (okay, okay, I’m getting to be old enough that sometimes I do… but not in this case) it is that the brilliant people who come up with these wicked cool toys that the emergency response vehicles have to help them in their pursuit of protecting all of the people need to realize that there are (GASP) people that they need to protect that they are probably causing harm to.

I understand that the good of the many usually outweighs the good of the few, but if we made the leap between the bubble light to the AWESOME COOL (sarcasm… sorry… I’ve been into the coffee this morning) light bars, I’m betting that we, as a people, could figure out how to pull over for something less apt to be seizure inducing than what we have now.

We put warnings on games.  We alert bicyclist that their flashy lights may be a trigger.  We try to alert people at Halloween and Christmas that strobe lights and rapidly blinking lights may be triggers.

And maybe, just maybe, these lights don’t trigger more than 1% of even those who have Photosensitve Epilepsy (see Wikipedia definition below), and maybe the ones that might be triggered aren’t Tonic Clonic (grand mal for those who know what they used to be called) but only absence seizures… SO what.  If one person is affected by the people who are PROTECTING the public… is it really worth looking wicked cool when you are serving and protecting?

Today, I’m going to craft my own letter to the local police suggesting that the light bars may be causing seizures.  I figure it will by my version of jousting at windmills, but I’m nothing (as many people who know me will attest) if not the champion of lost causes.

Photsensitve Epilepsy is when “seizures are triggered by visual stimuli that form patterns in time or space, such as flashing lights, bold, regular patterns, or regular moving patterns”

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.

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.

 

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