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

Why… How… mostly Why…

I’ve been quiet… too quiet… and I feel very guilty for that.  It’s been a long hard few months and I need to get back to finding myself.

This week, Adam has an epilepsy doctor appointment.  He has been seizure free for 2 1/2 months.  I face September with a sinking feeling… he has been seizing about once every three months… and we are coming up on that now.  I worry.  I can’t do anything about it… but I worry… what if he seizes when he’s on the bus between school and where I pick him up…

Amandya has gotten back to stable.  The absence seizures that were surrounding her gastroparesis treatment have gone away and she is back to being seizure free.  I worry.

Yesterday we were in Walgreens waiting for my Flu shot and my Hepatitis B shot.  While we were there, a woman about my age was there trying to get her first prescription of Keppra XR.  Turns out that Pennsylvania isn’t the only place there is some kind of Keppra shortage.  Go figure.  We got to talking and I think maybe I made her feel a little less like a freak.  I hope so.

She was just diagnosed.    She’s learning the vocabulary of her new normal and reaching out for support.  I hated to disillusion her… our town doesn’t have much in the way of epilepsy support.  It makes me sad.  Given she can’t drive, I didn’t really have the heart to tell her that if she wants support, she should probably suck it up and get someone to drive her 90 minutes south and hope like heck they have something she can sit in on there.

I want to help… I want desperately to help.  But I feel so much like I’m jousting at windmills and only the wind is on my side.

A little catching up to do… but I’ll get there

Hey everyone – I just wanted to tell you about a new activity I’ll be doing this April. The Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you’ll join me in writing every day about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here:http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around. Looking forward to writing with you!

Reflections On Purple Day 2012

So… it is the day after Purple Day 2012.  Yesterday I wore my Anita Kauffman T-Shirt and my purple Buff headwear… I was reflecting on Adam’s week last week in the video EEG room… trapped… with only marginal responses.  The doctor suggested it would be a good idea to take pills.  Skinny butt said that, if he had another big seizure, he would, but unless he had one, or could have a definitive diagnosis, he would not take them.

Jump forward three whole days.  Ironically… on Purple Day… the International Epilepsy Awareness day… He had another major seizure.  He went to spend the day with his friend at a local large university.  It was a day like any other.  Late afternoon… my cell phone rings.  It’s Adam.  Adam NEVER calls me.  He texts me… he sends me jokes… he never calls…

My first thought… he got hurt or mugged…

Nope.  He had a seizure.  Sixty miles from home.  Thirty miles from me.  I know he’s 20, but he’s my little boy.

How do I find one skinny little (6 feet tall) boy on a huge college campus?  You keep calling since he is awake and kind of alert and see if he can help you navigate.  Fortunately his friend got out of class and helped, too.  I was never more relieved than when I saw them walking across campus… his friend steering him the way I used to when he was little and playing with his game boy.

So… now we start the Lamictal and see if that keeps him from seizing again… and we start counting officially… we are one day seizure free for him… 19 months seizure free for Amandya… the adventure  continues…

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…

A Whole New Chapter Begins

It isn’t like I thought life would get boring (or even normal or anything) but I could have lived with the seeing out of 2011 being quieter.

Tuesday we had Amandya’s neurologist appointment.  Dr Reardon assured here that he would be good with her seeing him until she is into her early 20s.  That made both of us go whew.  He also said that he would do an EEG (sleep deprived) that is coming up tomorrow at noon to see if she can start to be weaned off of her Keppra.  It is a good thing.

Wednesday she had her psychologist appointment and everything went well.

Wednesday night I got a phone call on the house phone from Adam telling me that one of his bud’s from high school moved back into town and he was going to hang with him for a while.  He might decide to stay the night and play music and video games.  I made sure I told him to call to let us know for sure if he was staying and he said yeah, sure, no problems.  He knows we worry and would much rather lock the door if he isn’t going to be coming home.

An hour later I got a call on my cell phone.  It was a very polite, very rattled friend from high school telling me that Adam had a seizure.  Actually, he said Adam passed out.  I went fishing and figured out that what poor Brenden was describing wasn’t passed out, it was seized.

His eyes were open and fixed
He was unresponsive
His arms were flexed and jerking.

I calmed poor Brenden down (all the while realizing that I’m supposed to be freaking out at this point.  I’m supposed to.  Normal people would be) and told him he did good and that Adam would be okay.  He said that he was going to give Adam a drink of some pop (Manzanita… Mexican Apple Soda) and bring him home in a bit when he was back to himself some more.  He didn’t end up waiting till he got back to himself.  Nearly, not quite.

Twenty minutes later (he lives a couple blocks away) Adam was standing in my bedroom doorway, lips absolutely white, eyes not quite focused.  He was semi coherent and complaining of being tired and having a headache.  He fell asleep on the couch to the Christmas tree lights.  He slept two hours or so and then started talking.

He remembers feeling pressure on his forehead.  He remembers feeling like he was getting one of his shivers/twitches and the next thing he remembers was his headache and Brenden trying to help him come around.

Since then he has had the feeling like something isn’t right.  Thursday he couldn’t remember where he was when he was sitting in the car with dad at the light at Walmart.  This is somewhere he hangs with his other friend and has walked many times on his own.  He couldn’t figure out what the ball park was when he passed it on the way home (again, something he passed all the time) and the field (easement near our house) looked all wrong and too empty (it hasn’t changed in months and months and then it is only that the grass is taller when there is normal rain).  He’s said that the back yard doesn’t look right.  The dog doesn’t look right.  Things are just kind of about a step out of time wrong.  Kind of like the polar opposite of DejaVu.  Hope (lady from Facebook) said it sounded like Jamais vu and it really does.

This had to happen when everyone is going on vacation for Christmas/New Years.  No doctors are any where around.  Eeesh.

So we are going to try making him an appointment with Amandya’s neuro (his old neuro) when we go in tomorrow for her EEG.  I won’t get lucky enough to get him in this year, but I guess that is to be expected.

Looking at his shiver/twitches (the ones that start at the base of his skull and sometimes make his face twitch… sometimes make both arms flex and twitch) I’m starting to think more and more that they are Myoclonus seizures.  He has brushed them off for the longest time, and said that as long as they aren’t affecting his day to day life adversely he didn’t want to see anyone.  Now he’s willing to see the doctor.

I don’t know if he will brush it off as nothing to be concerned with, or not.  I’m hoping he takes everything into account and really listens when it comes time to take Adam in.  And I hope we don’t have another tonic clonic event no matter how short (Brenden claims it was seconds).

It looks like December 21, 2011 is a lot like January 21, 2010… another day like no other.

A Book In Progress

Well, I’ve now decided that it is time to get off my butt and get going on wide scale book writing.  I’m working on an RA book (rheumatoid arthritis) and have officially started “A Day Like No Other” about getting diagnosed with Epilepsy.

I would love to have people’s stories to add in.  I will gladly obfuscate your identity if you don’t want people to know who you are but want your story out there so other people can learn.

I can let you know how to get me your stories if you let me know you want to help.

thanks

=)

and from Kaitlin’s Cauze…

thinks without a brain the ta ta’s don’t matter. In Your Face Fact- epilepsy is as common as breast cancer and takes just as many lives. Let’s save the brain so we can find two cures!

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