Tag: seizures

The Hardest Conversation

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This is long so please bare with me!

Seeing all the posts about Cameron Boyce conjured up a lot of emotions, maybe because I knew Meg would be seeing it too and now she’d be exposed to some of the ugly truths that were out there and associated with epilepsy. It made me reflect a lot on our own journey and how things have evolved and changed as she’s gotten older.

When I opened my phone and read the news I froze. It hit me like a punch in the gut! My heart began to ache as it often does when I see these tragedies in some of the groups I’m in and when I think about how some of the foundations like Danny Did and Chelsea Hutchinson came to be.

I wondered how Meg would react to the news? When she was little it was easier to shield her and keep everything happy and positive, but now she’s almost 17, the information is out there, and she was going to see it!

We live in a social media culture where a smorgasbord of information is available at our fingertips. The internet is unedited, its raw and it can be pretty harsh. News like Cameron Boyce’s death is often splashed all over the internet in mass amounts without any thought for who might be reading it. People make assumptions without facts and lose filters they’d normally have in person. Emotions run high and it can be overwhelming.

I’m not speaking sanctimoniously, it’s been a learning moment for me too, I’ll admit I’ve participated in this culture. We see a post and are quick to post our fears not thinking who might be on the receiving end. At the same time the good parts of social media aren’t lost on me as I know the power and global reach of social media when it comes to raising awareness. A double edged sword I guess?!

When Meg was little we advocated hard, I was fiercely protective and unapologetic for it. We were in and out of hospitals, and I wanted to protect her in any and every way I could. I wanted to learn everything and put all that information out there, because in my mind the more people knew about epilepsy the safer she was. I took a lot of flack from moms who said a lot of hurtful things and gave very critical, unsolicited advice. I was often written off as hypersensitive or as a “helicopter mom” that one was used a lot! The truth is, most of the time, I really just needed friends. It can be a difficult journey and as parents we beat ourselves up plenty, wondering if we’ve made the right decision on the meds, the procedures, the doctors, the hospitals, the care, etc… If you really want to help someone be a friend, be inclusive and don’t judge, but I digress!

We made some unbelievably supportive friends online (one of the most positive parts of social media for us) and we even got to meet a few of them when we ventured to D.C. to participate in the National walk for Epilepsy, but as Meg got older and as kids became assholes (like they do in middle and high school) Meg decided she wanted to be a bit more private and I respected her wishes.

When we told Meg about Cameron she thought it was a hoax, but we told her his family had confirmed and we saw her mind start to churn. She’s been a huge fan of Cameron since he was on Jessie and most recently as Carlos in Descendants. We knew throughout the day she would be bombarded with all the posts and comments. She was going to have questions!

“Mom he died from a seizure!”

I thought carefully about how to respond.

I explained that a seizure doesn’t always mean epilepsy. There are many addictions and other disorders that can result in seizures and told her we shouldn’t assume anything.

A few days later it was confirmed that Cameron did, in fact, have epilepsy. We talked about how there are many different types of epilepsy, the importance of taking meds and safety. We discussed how we wish we’d known Cameron was epileptic and I explained that while some people choose to use their fame as a platform to raise awareness others like their privacy.

We continued to have little chats here and there, but as the articles seemed to quiet so did Meg’s questions and up until today she seemed okay with it all!

Today was hard!

Meg saw a post from one of Cameron’s co-stars in Descendants. Apparently Descendants 3 comes out tomorrow and the co-star has posted a tribute.

“Mom Cameron had epilepsy and he died from a seizure…” she paused and rubbed her face. I could tell she wanted to ask me something, but was struggling.

“It’s okay baby you can tell me what your thinking.”

“I just don’t know how to say it!”

I knew what she wanted to say, I had been dreading this moment.

I took a deep breath and said you’re wondering because Cameron had epilepsy and he died from a seizure if the the same could happen to you?

She looked at me like I’d lifted a huge weight off of her and hugged me really tight!

“He was 20 mom!”

I’ve always been honest with her and as hard as I knew it was going to be I had to finally tell her about SUDEP (sudden unexplained death in epilepsy). I explained that it was rare and just because this had happened to Cameron didn’t mean it would happen to her. We don’t know everything that led up to Cameron’s death, if he’d missed his meds, if he’d been drinking, etc… we talked again about the the different types of epilepsy, the importance of taking meds and keeping your doctor informed of changes. I told her how all disorders have risks from diabetes to heart disorders. Her eyes welled up…

“There are days I don’t mind being epileptic and there are days I hate it, today I hate it!”

My throat tightened!

“I know! I wish so much I could take it from you, but this is one thing I can’t fix baby I’m so sorry!”

I could feel my eyes starting to well up too.

We both hugged each other and cried. In that moment I just wanted to take it all away, all her pain and all her fear. I don’t know if I handled it well? How do you handle such a hard question? So I did the only thing I could in that moment…

“Oh my goodness, Meg your crying and I’m crying and it’s raining, we’re a hot mess!”

She threw her head back and laughed glad, I think, that I’d injected a little humor into the conversation. She looked at her watch.

“Why are you looking at your watch?”

Meg smiled at me through her tears.

“I was just thinking it would be funny if daddy walked in right now!”

“Oh my gosh, right!”

We hugged some more and Meg grabbed her phone. I was glad we were able to laugh a little and she seemed content with everything we’d talked about.

“I love you Mommy!”

“I love you too!”

We snuggled and watched some videos together and while it had been a difficult moment my heart swelled with pride at how well she handled everything.

Let’s Talk About It…

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It’s November! You know what that means… It’s time to talk about it!

Talk about what? 

Talk about Epilepsy of course!

Our daughter Meghan has Epilepsy so it’s important to us to spread the word about Epilepsy! 

We want to educate YOU! 

Did you know there are 65 million people worldwide that suffer from epilepsy or a seizure disorder of some kind?

Over 3 million of those people live in the United States and 300,000 of them are children under the age of 15!

Those are pretty astonishing numbers! 

Let me put it another way:

The number of people living with epilepsy or a seizure disorder is GREATER than the number of people living with Multiple Sclerosis, cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined!

You know what else is crazy…

One third of those 3 million people  live with uncontrolled seizures, because right now there isn’t a treatment available to them that works and for 6 out of 1o of those people the cause of their seizures is unknown.

So what do I want you to know about epilepsy?

I want you to know:

  • Epilepsy is a medical condition that is not contagious, but talking about it should be!
  • A person having seizures is not possessed by the devil!  A seizure is an electrical misfiring in the brain and can cause many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs. ~Epilepsy Foundation~
  • NEVER put something in a person’s mouth when they are having a seizure! Contrary to popular belief a person can’t swallow their tongue.  You are more likely to get hurt or hurt the person having the seizure, by trying to force their mouth open.

*Video courtesy of The Talk About It Foundation

  • Treat a person who has seizures no differently than how you’d treat any other friend or family member!
  • If you ever have a seizure find yourself an epileptologist you feel comfortable with and talk about your options.  You may only need a small amount of medicine to control your seizures! However there are other treatments available like VNS and even surgery.

Most important TALK ABOUT IT!  Don’t be afraid to ask questions or go online, there are lots of really great places to get information:

So are you gonna help me get the word out?

Cool!

Here are some tweetable facts courtesy of Ken Lowenberg of The Talk About It Foundation.  Use the hashtags #EpilepsyAwareness

#Epilepsy  #TalkAboutIt

If someone is having a seizure, NEVER put anything in their mouth! #Epilepsyawareness

If someone is having a seizure, NEVER hold them down or restrain them in any way! #epilepsyawareness

#Epilepsy is NOT Contagious but talking about it should be. #epilepsyawareness

#Epilepsy is NOT a mental illness. #epilepsyawareness

65 MILLION people around the world live with #epilepsy.#epilepsyawareness

NEARLY 3 MILLION people in the United States have #epilepsy. #epilepsyawareness

BETWEEN 4 AND 10 OUT OF 1,000 people on earth live with active seizures at any one time.#epilepsyawareness

There are 200,000 new cases of #epilepsy in the United States. #epilepsyawareness

ONE-THIRD of people with #epilepsy live with uncontrollable seizures because no available treatment works for them. #epilepsyawareness

For 6 OUT OF 10 people living with #epilepsy, the cause of their seizures is unknown. #epilepsyawareness

50,000 people die from epilepsy-related causes in the United States every year. #epilepsyawareness

90 PERCENT of people with #epilepsy live in developing nations. #epilepsyawareness

9 OUT OF 10 people with #epilepsy living in Africa do not receive proper treatment. #epilepsyawareness

Be Safe And Seizure Smart On Halloween!

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We love Halloween!

Dressing up, going door to door, seeing all the different costumes people come up with and walking up to the spooky decorated houses is so much fun!

However, we also have rules to keep us safe and seizure smart while we’re Trick or Treating!

Here are a few things to remember to keep your kids safe and seizure safe:

  • Make sure you don’t skip your seizure medication.
  • Have a cell phone and emergency meds on hand if you are walking long distances.
  • Trick or treat with a friend of family member familiar with your seizures.
  • If you are photosensitive avoid houses with strobe lights.
  •  It’s a good rule of thumb to check all your candy before eating it, but definitely don’t eat it if you’re on a restrictive (Ketogenic or modified Atkins) diet.

A great suggestion I got from my sister-in-law Denise over at RunDMT for kids who are unable to eat their candy due to dietary restrictions:

  • Check out the Halloween Candy Buy Back Program!  Some dentists will buy back your kids candy and then ship it overseas to the troops!  So not only will your kid be making money… they’ll be helping out our military overseas! It’s a win win!
  • Wear reflectors or glow necklaces so cars can see you.
  • Always walk on the sidewalks when possible.
  • Always look both ways before crossing the street.
  • NEVER enter a home for candy!

It’s important to be safe and seizure smart, but it’s also important to make sure you have FUN!

Here are a few fun facts about Halloween I found over at the Epilepsy Therapy Project:

  • The celebration of Halloween started in the United States as an autumn harvest festival. In pioneer days, some Americans celebrated Halloween with com-popping parties, taffy pulls and hayrides.
  • In the late nineteenth century, with the large influx of Irish immigrants into the U.S., Halloween became associated with ghosts, goblins and witches.
  • Jack-o-lanterns are an Irish tradition. In Ireland, oversized rutabagas, turnips and potatoes were hollowed-out, carved into faces and illuminated with candles to be used as lanterns during Halloween celebrations.
  • The pumpkin originated in Mexico about 9,000 years ago. It is one of America’s oldest known vegetables. Pumpkins generally weigh from 15 to 30 pounds, although some weigh as much as 200 pounds. The majority of pumpkins are orange, but they also can be white or yellow. They are rich in vitamin A, beta-carotene and potassium, and their seeds provide protein and iron.

Facts taken from Candy USA: http://www.candyusa.org/Classroom/Facts/default.asp?Fact=Halloween

Talk About It Weekend

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The only experience with seizures I’d had, prior to Meghan’s journey with epilepsy, were with a friend in high school.  I remember staying the night at her house and being woken up by her having a seizure.  She had never told me she was epileptic and I wasn’t sure what to do!  I ran to get her brother who came in and explained what was happening to me.  After that I always felt like I needed to look out for her and there were a few occasions where I did have to call an ambulance and/or her mom.  I never thought of her as a girl who had seizures, she was just Faith and we were pretty good friends throughout our senior year of high school.  Unfortunately, after high school she decided to move to Indiana and we lost touch!  Maybe meeting Faith was where my actual journey with epilepsy began or maybe it was just coincidence? I don’t know? But it’s something I ponder every now and then.

After Meghan started having seizures it was really hard to find support and often times we felt alone!  Perhaps it was because there wasn’t a huge need for support in our area or maybe it was because we didn’t know where to look? I found a few online websites/forums and posted once or twice, but I didn’t feel a real connection to any of them.

It wasn’t until after I joined Twitter in 2008 and saw a tweet from Greg Grunberg about the Talk About It website that I felt some sort of connection!  Maybe I was awed because he was an actor from a show I watched for a while? I’d prefer to think I was intrigued because he was a parent, much like me, the only difference being he had the audience and resources to do what I had really wanted to do for the last six years… Talk About It!

Okay! Yes yes I’ll admit I was a little star struck too! *grin*

It took a while for the website to be up and running, but I was really happy once it was!  I joined and met Ken Lowenberg, a great guy who facilitated the online support group!  Ken often made the group feel as though it was the heart of the foundation; including us on upcoming events and helping us break the ice and get to know each other.  It really felt great being able to talk with people in real-time.  Meg was even able to Skype with another young girl her age who also had epilepsy.  So it was a no brainer (pun fully intended) when Ken told us about Talk About It weekend that we were all excited and wanted to participate in any way we could!

I found out the EFOF (Epilepsy Foundation of Florida), who cover my region, were going to be a part of the Talk About It weekend and after a few emails back and forth with Heather Steele Hernandez I was told we could participate in my community!  It was also around this time I found out EFOF had started a support group at one of our local hospitals! When it rains it pours people!  Heather hooked me up with a lady who helped run the support group and she in turn put me in touch with another lady and before I knew it we had a date to Talk About It! September 9th we would be talking about epilepsy right down the street from where I live.

When the morning of Sept. 9th  came I was a little nervous! I had never participated in something like this before and I wasn’t sure how we would be received! Not to mention it had been raining most of the night and there was still a slight drizzle.  When I arrived at our location Tina had already set up! So I snapped a quick picture and waited for the rest of our volunteers to arrive.

Finally we donned our sexy, little yellow jackets, armed ourselves with gobs of information, discussed our strategy and got into position.

The first person I tried to talk to brushed me off and made me feel a little anxious, but I didn’t let it prevent me from the task at hand.

My friend Lillian and I couldn’t believe within the first hour, at least ten of the people we’d talked to had either experienced or dealt with a seizure.

We were also pleasantly surprised so many people were willing to listen and really take in what we were saying!

 It was amazing!

I was definitely proud of my community!

Even though it had started off a rainy day we ended up raising over $240 and giving out over 300 pieces of literature!

I can honestly tell you we don’t feel alone anymore!

There are many communities out there doing their part to raise awareness and funds for epilepsy research and with the help of social media they’re reaching more and more families!

 Talkaboutit.org is one of those organizations and it has helped our family build friendships with some amazing people and for that I’m truly grateful!

A big thank you to Talk About It, The Epilepsy Foundation of Florida, Lundbeck  and Publix for making this weekend possible and allowing me to be a part of it!