Myths....

I was approached a the parade this morning, asked about our sweatshirts. When I explained that Emma had Epilepsy, the older man that had asked, said he was going to be move "because I don't want to catch it"

Epilepsy is not contagious.

It seems ridiculous to me to have to write those words. Cancer is not contagious, cerebral palsy is not contagious. Epilepsy is not contagious.

Epilepsy has been noted throughout history. During the time of the witch hunts, one book was quoted to say that "one of the signs of a Witch, is seizures"

At various times throughout history, people with Epilepsy were shunned, locked up, and sent to mental institutions. It has been thought that seizures were caused by witchcraft, insanity, possession, and even masturbation! Seems ridiculous, but thankfully, most of that is in the past.

Most of it.

Some myths can be associated with what to do if you see a person experiencing a seizure.

The tongue CAN NOT be swallowed. Do NOT force anything into the persons mouth, this can cause more damage.

Another still is that people with Epilepsy are intellectually impaired. I assure you, most are not. While Emma's Epilepsy is causing her to have a few developmental delays, it's nothing she can't catch up on once we get her seizures controlled. People with Epilepsy come in all ranges of abilities and intelligence, just like everyone else in the world.

Epilepsy is NOT a mental disorder. Plain and simple.

Another still, is that people with Epilepsy look different.

This my friends.......

.....Is what Epilepsy looks like.

This is the face of Epilepsy.

Take a look at my side bar! My friend Stef made it for me! She also made it big enough to put on T-shirts! YAY! Want to put it on your blog? or use it as a profile picture on Facebook? Go for it!

My plan is to put them on T-shirts for me and the girls, and wear them often. There's a veterans day parade tomorrow and we're all going to wear them. Or well, maybe sweatshirts because it's in the morning and the lows have been in the 30's here. Quite a difference from 90's last week! but I'll take it!

Anyway. The point of my post today is awareness. Epilepsy seems to be taboo. In all honesty, 2 months ago I didn't know alot about Epilepsy, I knew what it was, and I knew what seizures were, but I didn't know what I know now. Even now, there is a ton I don't know or understand.

Almost everyone I know, and have talked to, seems to know at least one person with Epilepsy. One survey showed that 1 out of 3 adults, know at least one person with Epilepsy.

Since last month was Breast Cancer Awareness Month, I'm going to use Breast Cancer as a comparison. Again, I'm not diminishing the severity of the disease, Its just one of the more well known causes and diseases.

Everywhere you go you can get mugs, shirts, bumper stickers and other things to support Breast Cancer awareness and research. You can even buy Lay's potato chips that come in a pink bag! Have you seen anything for Epilepsy? Some potato chips in a purple bag? Even a mention of it on the news? A poster?

I haven't seen anything. And it breaks my heart. Truth be told, last year at this time, I wouldn't of known it was Epilepsy Awareness, because the cause was never close to me, or splashed all over. But what if they mentioned it on the news? What if you could go to the store and find Epilepsy Shirts? What if it wasn't Taboo?

Here are some facts Epilepsy

There are 200,000 new cases diagnosed each year.
Epilepsy affects 3 Million Americans
10% of Americans will experience a seizure in there lifetime
15.5 Billion Dollars is spent in direct and indirect costs each year

And as I mentioned before 50,000 people die each year from SUDEP and Epilepsy related incidents.

There is no cure for Epilepsy. It sometimes can be controlled with medications, Diets, and surgeries, but there is no cure.

Compare that to Breast Cancer.(2009 Estimated Stats)
192,370 new cases were diagnosed
There are an estimated 2.5 million breast cancer survivors in the USA
40,170 were estimated to die in 2009

So as far as new diagnose's, deaths, and people living with breast cancer and Epilepsy, the numbers are kind of neck and neck. Not exact, but pretty close. Yet the publicity for Breast Cancer is tenfold what it is for Epilepsy. Not to mention, the reasearch funding that Epilepsy gets is minimal. I was unable to find exact figures, but the NIH spends 30 Billion each year on Medical research. .5-1% of that goes to Epilepsy. Nearly 1 Billion was raised and used for Breast Cancer Research.

Again, please don't misunderstand this entry. I am in no way trying to diminish Breast Cancer, I'm simply using it for comparisons sake, and I hope and pray that any and all diseases can someday have a cure.

So please, I bet of you, don't let it be Taboo. Talk about it. Raise awareness. Let people know that they don't need to suffer in silence.

Facts and statistics that are in this post were found at the Epilepsyfoundation.org and Cancer.org.

To tired...

I'm to tired and mentally and physically worn out from my day today that I don't really feel like posting a real entry today, I know I said I would post something Epilepsy related each day, buuttt....


It's been a hard 24 hours. We found a dog, a mini schnauzer, we've been looking for one for a loooong time, well, since we moved here. We thought that having a "friend" around would help Emma. So we got her. Her name was Kenzie, and she was the most adorable, sweetest, little lovable dog ever. She did awesome last night and slept all night in her crate without a peep. She had no accidents, and just loved on everyone.

This morning she was barking, I went to see what she was barking at, and there were people coming up the stairs to go to hte apartment next to us. I looked at Emma, and she was having a seizure. The first one ended, and she had 2 more after that. Dog was quiet for awhile, Emma didn't have seizures. Dog barked again, Emma had 4 seizures. Dog was quiet, emma didn't have Seizures. Dog Barked, Emma had another 3 seizures. This was all within an hour. The Barking was triggering seizures.

We had to make the horrible choice to give her back. Luckily, the people were very understanding. We got the dog to help Emma, not make her worse. We dropped the dog back with the owners, and I bawled. I felt like the worlds most horrible person.

But. I know I made the right choice. We could of trained her not to bark, but until them am I suppose to just have Emma have seizure after seizure? No. I'm an Animal lover hard core, but my child's health comes before a dog.

Emma hasn't had any seizures the rest of the day.

so I guess, in a way, this was related to Epilepsy. Sometimes things trigger seizures, sometimes they don't. Emma's triggers are loud noises, lack of sleep, and overstimulation.

A wide variety

Seizures take all different forms. When you say Epilepsy, or Seizures, most people automatically think about Hollywood's depiction of them. A person on the floor, convulsing violently. Honestly, this was my impression until recently.

The truth is, there are over 40 different types of seizures and seizure disorders.

I'll start with the type of seizures Emma has. (sorry if this is a repeat from previous entries)

Her official diagnosis is "Primary Generalized Non-Convulsive Epilepsy"

Lets break that down.

Primary Generalized - Means that there are electrical discharges that don't radiate from one side of the brain, rather they start from both sides of the brain. These can take on a wide form of physical charateristics, which I have listed below.

Absence - The type that Emma has. They can commonly be mistaken for daydreaming. They usually last 10-20 seconds, and can occur as many as 50 times a day. Another name for these might be petite-mal. They can be simple - just staring, or complex, when muscle changes occur, such as contracting, or relaxing muscles. Emma experiences both types.

Atypical Absence Seizures - the same staring that occurs with a regular absence seizure, but the person experiencing it is somewhat responsive.

Myoclonic Seizures - These are more or less similar to muscle spasms. One part of the body "jerks" and it make occur a few times in a row. These occur in several different Epilepsy Syndroms.

Atonic Seizures - In these seizures, muscles loose their tone, usually causing the person to "drop" The head may nod, and your head may drop. Sometimes they are simply called "drop seizures". Although not part of her "official diagnosis, I have noticed these in Emma, more frequently latley. Just another thing to ask the Neuro when I call next week!

Tonic Seizures - Muscles stiffen, instead of loose tone. They usually occur during sleep. They are common in a syndrome called Lennox-Gastaut Syndrome.

Clonic Seizures- These are pattern of rythemic Jerking movements limbs, sometimes affecting both sides of the body.

Tonic-Clonic Seizures - These are the seizures people most commonly think of. They use to be called "Grand-Mal" and some people still refer to them as that. The person falls to the ground, and experiences rapid muscle jerking. The person generally looses consciousness. They last between 1-3 minutes, although if they last longer than 5 minutes, it usually requires emergency help. They posses qualities of both Tonic and Clonic seizures.


Partial Seizures - These seizures begin in one particular part of the brain, instead of all over.

Simple Partial - They are described many ways, and the person stays alert through them, it can start with an "aura" such as an odor. They are sometimes followed by a Generalized Seizure. They are divided into categories, depending on the symptoms that are described. They are classified into Motor, Sensory, Autonomic, and psychic.

Complex Partial - These start in a small area of the temporal or frontal lobe, they then quickly involved other parts of the brain, affecting Alertness. The symptoms of these are very subtle, and like absence seizures, someone may just think the person is day dreaming

Secondarily Generalized Seizures - These start as a Partial seizure and then spread to the rest of the brain.

All of the information here was found on Epilepsy.com

I realize that you could find this information for yourself, but I had a request from a friend to blog about this today, because she wanted to be aware of the broad spectrum of seizures. I have not listed all disorders related to Epilepsy, there are many, many more. But I hope that I have summarized it fairly well.

And unfortunatley, I will not be able to get the bracelets, the site I was going to get them from ended their sale. If anyone has any other requests they would like to learn about, let me know!

SUDEP....

I'm bound and determined to write about Epilepsy every day this month. This disease does not get the attention it deserves.

The post of today is a hard one to write, but I want people to be aware of the horrible outcomes that can stem from Epilepsy. I don't dwell on it, it don't sit and think about these things everyday, if I did, I would go crazy. But nonetheless, it's something that crosses my mind, causes me to worry, and brings me to my knees in prayer.

Everything in this world (especially my world, thank you United States Army) seems to have an acroynm. There is one that gives me shivers just thinking about it.

SUDEP

Sudden Unexplained Death In Epilepsy Patients.

It is exactly what it sounds like. Nearly 50,000 people die annually in the United States from Status Epilepticus, SUDEP, and other accidents that happen while having seizures, such as drowning, or falling.*

50,000.

That is 10,000 more than Breast Cancer.

Side Note: I'm not diminishing the severity of Breast Cancer, my life as been affected very closley by the horrible disease. I'm simply using the statistics to bring attention to Epilepsy.

Can SUDEP be prevented? Can accidents be prevented?

There are things out there that can be done, and monitors that can be purchased. But sadly, the FDA doesn't recognize these devices as neccessary or believe that they can prevent SUDEP from happening. But in Europe it is. The Emfit Monitor is sold and marketed as an Epileptic Seizure Alarm, in the United States it is simply a movement Monitor.

Unfortunatly it is expensive, and it is not covered by insurance because it is not seen as a neccessary medical device. This particular device is 600$. No one I know would be able to just go out and buy this. Do we know how many deaths could of been prevented if they had something like this? No. We don't. Does it detect every type of seizure? No. It doesn't. For instance, it wouldn't detect Emma's seizures, because her's are "small twitches and blank stares." Will it prevent every SUDEP case? Probably not. But, what if it prevents just one SUDEP case? What if it allows one parent a full night sleep instead of checking on their child every hour to make sure there ok? Would it be worth it? I think it would!

In my first post yesterday I mentioned the Danny Did Foundation. Danny was a 4 year old boy who had a few seizures in his life. Just like us, his parents were told that there was no known cause, and that he would likely outgrow it. After medications and tests, Danny seemingly returned to normal. He was seizure free for 18 months.

On December 12, 2009, his parents found him lifeless in his bed. They did everything in there power to revive him, but all efforts failed. Just 4 days prior to his death, he had an hour long EEG that showed a decrease in seizure activity.

His family started the Danny Did Foundation in his name. The Goals of the Foundation are as follows (taken from the Danny Did Foundation website) (1) advancing awareness of Sudden Unexplained Death in Epilepsy (SUDEP) and enhancing the SUDEP communication model between medical professionals and those afflicted by seizures, and (2) the mainstreaming of seizure detection and prediction devices as well as other technologies that may assist in preventing deaths caused by seizures.

They also help to subsidize the cost of the EMFIT monitor and other devices for families that aren't financially able to afford such technology on there own. It's an amazing organization, and I want to get to the word out about them.

Kudos to them for stepping up and trying to get the word out about the possibility of SUDEP. This was something that was never brought to our attention by our neurologists, and it's something that I believe needs to be brought to the attention of everyone.

There is no cure for Epilepsy, and the truth is that Epilepsy patients face a mortality rate that is 2 to 3 times higher than the general population, with the risk of sudden death being 24 times greater.

So please, get the word out.

Facts given here were found on the Epilepsy Foundation website, as well as the Danny Did foundation website.

Totally unrelated to today's post, but going along with the Epilepsy awareness month, I'm considering purchasing some silicone Awareness Bracelets for me and my family, I would gladly order a larger quantity if there is an interest in these. Please leave a comment or email me at krob48@gmail.com if you would be interested in purchasing one.

Edited to add-

The Danny Did Foundation is a Non Profit organization, in Honor of Epilepsy Awareness Month, they are hoping to raise 50,000 by the end of the month. If 2,000 people donate just 25$, they will reach there goal.

I'm considering ordering 100 Bracelets, if there is an interest for them. I would then ask for 2$ a bracelet, and donate all of the money I made from the bracelets to the Danny Did Foundation. If I get 25 requests for bracelets, I will go ahead and order them. Please let me know if this is something you are interested in!

A Happy Post!

Dragon and Bumble Bee ready to go!

You want me to do what?

Umm, why am I wearing this?

I really think at this age Halloween is more for the Parents than the children. Although, Emma *did* pick out her costume this year, first she wanted to be a pig, then a "duckling" and finally a dinosaur. When the day came however, she dubbed herself a Dragon. Works for me! We walked around the whole neighborhood, and it was one of the better times we had. Not having to worry about if the kids would be to cold was awesome. The MP's drove up and down the streets with their lights on (I was worried the flashing would set Emma off into seizures, but thankfully, they didn't). We did have a few meltdowns, but they were settled rather quickly. The Girls got lots of candy and enjoyed it. Although, Olivia just sat in the wagon and took it all in!

The following day (actually Halloween, Post did the Trick or Treating on Saturday) we went to Savannah, and Emma got to see Boats and walk up and down all the cool streets. I got some cute pictures there to!

Tommorrow will be a sad day. When Josh was set to deploy, Josh's Mom got a flight out here to spend a week with us, and still came even though Josh was home. It's been a fun week, and Emma loves having her grammie here! I'm worried that her leaving is going to confuse her again, but I know that the time she had with her was a good thing. So we drive her back to the airport tomorrow afternoon. I wish we all didn't live so spread apart.

I was going to....

Take a break from blogging about Epilepsy, seizures, medications, EEG's and MRI's.

I was going to write about our Halloween, and our week with Josh's mom.

I was going to upload pictures from our visit to Savannah yesterday.

And then I read my usual blogs that I read almost everyday.

And I came to Adventures in Babywearing. One of my favorite blogs.

And I was reminded that her son also deals with Epilepsy(although he's been seizure free for sometime thanks to the Ketogenic Diet)

And I was also reminded that November is Epilepsy awareness month.

So I thought it was appropriate that on November 1st I write a post about Epilepsy.

But I don't know what to write. It's a horrible, horrible disease. There are over 45 different types of seizures. From Tonic Clonic, to Absence seizures (which is what most of Emma's are)

I get frustrated when people talk about her seizures like they're not a big deal. Because she's not on the floor seizing and convulsing. Instead, her "simply" stares off into space. Or she has twitches, or drops of her head that usually only last 5 seconds. I was told once by a friend who's daughter also has epilepsy that her daughters neurologist explains that when a child has an absence seizure it's still almost like a frying pan hitting her in the head. The seizures confuse Emma, and make her tired.

I want to help. I want to help Emma and I want to help every other person in the world who deals with this. I want to bring awareness to this Disease. I want people to know what to do when someone has a seizures. I want everyone to know that you can't "catch" Epilepsy.

I want people to know that 70% of cases have no known cause. I want people to know that there are 125, 000 new cases of Epilepsy every year, and 30% of those new cases are children.

I want families that are dealing with Epilepsy to know that they're not alone, even though support groups are hard to find.

I want to help, so I do little things that I feel will make a difference. Like blogging here, even though It might not reach a huge audience, I hope the people that read it will pass along the information. Or passing along information about the Danny Did Foundation to a friend so she can get an Emfit Monitor for her daughter. I want to wear T-Shirts and plaster my car with bumper stickers, because MAYBE, just MAYBE, someone will look and will learn something about Epilepsy that they didn't know. Or even learn what Epilepsy is.

I want to help, and I want to inform everyone about Epilepsy. But, I'm only one person, and will do what little I can. Any maybe, if we all do just one little thing, it will add up to be one big thing.

I will post pictures of the kiddo's a little bit later on, we had a big weekend around here (which ultimately led to more seizures for Emma) so I'll be sure to share the fun stuff to.

I'm going to try to post some facts about Epilepsy everyday for the whole month of November.

The facts I posted here I got from the Epilepsy Foundation's website