Wednesday, April 4, 2012

Holding Our Breath

When Tommy first started having seizures a year and a half ago, we ended up meeting with the on-call pediatric neurologist at our local hospital. After breezing into the room and introducing herself, then talking briefly to Shane (I was with Tommy while he was having an EEG done), she announced that he wasn't having seizures. My heart soared and I hopefully said, "Oh?" thinking she was going to say he just had some sort of temporary sickness and we'd never have to go through that again. Instead, she said, "Yes! He's having temper tantrums and holding his breath." Just like that, my heart fell and the protective mother in me took over. I explained that while Luke did take away a toy from him shortly before one seizure, during the most recent one, he'd been walking toward me smiling and then he just fell and began seizing. I was angry. Hurt. Insulted. I couldn't believe that this complete stranger would think that I didn't KNOW what a temper tantrum looked like, that I'd somehow mistake that for a seizure.

Suffice to say, we made up our mind pretty quickly that Tommy would never be her patient. We left the hospital that night and the next morning, we took Tommy to University of Chicago. It was like night and day, comparing the two. Our appointment at University of Chicago lasted two hours. He'd already had all of the tests done at our local hospital, so none of this was testing. First we met with the resident, who went over a more comprehensive medial history than I've ever given. He examined Tommy. Then he took the test results from our hospital, his chartings, and conferenced with the pediatric neurologist. Then she came in and the first thing she said after introducing herself was, "Your son is definitely having seizures." I wanted to cry. Not because she said he was having seizures; I already knew this. Instead I wanted to cry because she LISTENED to us, because she took the time to care about my son and not just slap a blanket statement on him. I know that at a major hospital like U of C, she must see so many children who are far worse than Tommy, but she didn't blow us off and she understood that we are scared and looking for answers.

Sometimes with epilepsy, though, there are no answers. She couldn't tell us why he was having seizures or if and when he'd have another, but she gave us hope for a seizure-free future. These days, we're actually holding our breath (except for Tommy, who prefers to just yell at the top of his lungs), as he hasn't had a seizure since October. Since OCTOBER. We've never had such a long stretch. I don't know if this will be it. I'm afraid to even hope that this will be it, because epilepsy is such a tricky disease. There is still so much unknown about epilepsy.

This is why I'll be running for Tommy on May 12th. I'm choosing to run for the Greater Chicago Area Epilepsy Foundation for a few reasons. One, we don't have a very active local affiliate. Two, Tommy sees a doctor in Chicago, and I would like my money to go to research in that area. Three, I know a lot of awesome people in the greater Chicago area, some of whom are already signed up to walk or run for Team Tommy. How great is that?

Looking back on when Tommy first began having seizures, when I first opened up and blogged about it, I could not have gotten through that time without the support of this community. It was a scary, uncertain time for us, moreso than I could ever put into words. And so, as I was thinking about how I could bring more attention to epilepsy awareness, it hit me that I wanted to give back to the people who supported us, too.
With that said, I can't afford to give back to all of you; unfortunately, I did not have the winning PowerBall ticket, but I definitely want to give back to one of you.

With this post, I'm giving away a $30 gift card to one of these five awesome places: Starbucks, Sephora, iTunes, Amazon, or Dunkin' Donuts (winner's choice!). I thought to myself, Where would I like to spend someone else's $30 and these were the five that popped into my mind, so I hope you all think like I do.
What can you do to enter? Go to the epilepsy facts page and tell me something new you learned about epilepsy. That's it! Just learn something new and carry it with you.
For additional entries, you can do a few things. Join Team Tommy (Team Tommy will be walking on May 12th in Wheaton AND May 19th in Chicago and we will have t-shirts)! Don't live in the area? You can donate to support Team Tommy. Have you already joined or donated to Team Tommy? Awesome! You've already earned extra entries.
Finally, you can tweet or Facebook or blog about what we're doing. I would add up how many extra entries you can earn, but I don't teach Math.

Giveaway will close Monday, April 9th. Good luck--and THANK YOU from the bottom of our hearts.
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20 comments:

Julie said...

Can my fact be that I totally DIDN'T learn anything because I went to that exact page when Tommy was diagnosed? I did learn then-- I knew nothing about seizure disorders or epilepsy and I'm sad that I've been compelled to learn because it effects someone I love. Tommy is such an awesome little dude and I hope that the money you raise as Team Tommy will help lead to a cure!

Adam said...

Hey, if I win, can you just put that $30 toward the team and I'll buy my own donuts? Kthanksbye.

Julie said...

Also? Blogged: http://julievisionkitchen.blogspot.com/2012/04/tommys-team-have-you-joined-yet.html

Sarah said...

I read the whole page, I had no idea Epilepsy impacted so many people...and, 30% of new cases are children! WOW!

When I was a kid I suffered from petit mal seizures on a regular basis, but because they only lasted for seconds at a time, I was never diagnosed or treated. They are extremely infrequent now, only occurring when I'm 100% exhausted and/or super stressed.

It scared the crap out of my Mom, and was really frustrating for me, every single time it happened. I would stop talking, lose my train of thought and lose muscle control in my hands/arms. So, I can only imagine what you guys must go through with the big seizures. Thank goodness he's seizure free since October!!

Whitney (mother_maid from twitter Ü ) said...

I learned a lot, thank you for opening my eyes. I didn't realize it impacted so many either! It was always something I knew of, but didn't know about!! Good luck & I wish I could be there to walk/run with Tommy!!!!

Chrissy said...

I did not realize it affected so many either. Scary!! Good Luck!!

Sarah @ Feed My Family said...

I did not know that there were so many cases where the cause was undiagnosed.

Bari said...

I did not realize a cause isn't found in so many cases.

Foursons said...

I learned that something can be implanted in the brain to help stop them. Wow! And I'm with Adam- if I win put the money towards the team. :)

Adventures In Babywearing said...

I'm not sure there's anything more for me to learn but I must say that I am glad to see they've added diet to treatment options! Years ago that wasn't there. And for anyone reading this that might be seeking answers: seizure-freedom and/or control IS very real and possible.

Steph

Kristin R said...

I feel like most of that I knew, but I was surprised that there's a high incidence of new cases in those over 65!

Kristen said...

7 out of 10 people with epilepsy no cause can be found? So scary and frustrating.

If I win please just donate the money to the team, and if the gift card is already purchased I will use it to bring donuts for the team on May 12th. :-)

Anonymous said...

I learned that a regular sleep cycle can guard against have a seizure. I'm praying that Tommy's seizure in October was his last one EVER!

Maureen M.

Stephanie said...

I still remember reading that first post of yours and knowing how scary it is to see your child have a seizure. Granted my daughter's seizures were related to illness, but it was still one of the scariest moments of my life. I learned that 7 out of 10 cases of people with epilepsy have NO known causes - how frustrating! I know of three other people who have epilepsy and, when not under control it can be so life changing...but, with the right medication a person can go LOOOOOONG stretches without seizures. My grandpa had epilepsy and sometimes they'd have to change his medications because they were no longer working - but thankfully there are medications to treat them now.

PS - I wanted to try to make a visit to be part of Team Tommy, but this pregnancy has already taken a lot out of me. I'll be cheering you all on though - and maybe next year (with baby in tow :).

Host-It Notes said...

I learned that if there is a first seizure you should take your child in for a thorough medical examination to help determine the probability of further seizures. That helps determine what care the child will need. Thanks for a chance to win!

PhyllisAnn vandenBosch said...

I didn't know having an infection such as menigitis can cause epilepsy

Listen To Your Mother Spokane said...
This comment has been removed by the author.
Kaycee said...

I didn't know that in 7 out of 10 people they don't know the cause of the epilepsy, that's nuts. I always think of medical science diagnosing things and KNOWING the cause, I forget that really is not always the case. And (neurobiology was a looooong time ago for me) I forget how little we really understand about the brain, so much is guessing and learning by trial and error.

It's so awesome that you are participating in the run and even more awesome that those near you are doing it too.

The Legers said...

I honestly didn't know what a seizure technically is - sudden bursts of electrical energy that disrupts functions of the brain - never knew. Thank you for encouraging me to learn something new!

Anonymous said...

i didnt know animals could have epilepsy as well! scg00387 at yahoo dot com