Purple Pumpkins!!

This Halloween I’m pondering doing purple Jack-O-Lanterns for our front porch. Of course, purple is the color for epilepsy awareness, and since, as the kids say, I’m about that life, I’m looking into painting a pumpkin purple. I think Liz and I will have a great time painting them and carving them. I’m excited about this little endeavor.

I’m wondering how to do this at a school level, and use them to spread epilepsy awareness. I’d love to sell little purple pumpkins to the students, but you know that wouldn’t end well. I’ve also thought about putting little purple pumpkins in the staff mailboxes, with a little note about epilepsy awareness month. The hope being that they’d keep them on their desks for kids to see. I’m going to keep pondering this. Hmmm….

In a weird twist of fate, I’ve been put on Zonegran to keep me from having headaches. If you’ll remember way back to Christmas 2010, you’ll remember that Zonegran was the medicine that Liz was on that made her develop kidney stones. I’m REALLY hoping that doesn’t happen to me. Fingers crossed. I’m honestly just hoping that my headaches improve to the point that I don’t have them. I’m already in such pain from the fibromyalgia, and I don’t need anything else on top of that.



Liz continues to do well, which is such a blessing. She’s living a normal 9 year old life, and I love that she gets to. 

Good News, And Yet, I'm Annoyed.

I really need to do better about blogging. It seems that I think of fifteen different topics to talk about, but by the time I get an opportunity to blog about it, I'm exhausted or preoccupied. I vow to do better.

So, the good news. Well, last week the kiddo had her bi-annual neurology check-up. It has been eighteen months since any seizure activity. The doctor wants to see her in February and do an EEG. He said that if it's normal, then after she starts her menstrual cycle, if she's still seizure-free, then we could start a timeline to ween her off her medication. I know there's a lot of if's to that statement. It's just...this has NEVER been a possibility. Ever. It was always understood that her seizures were severe enough that she'd always be medicated. Now there's a tiny possibility that she won't. There was much rejoicing at our house that night.

Now, why am I annoyed? I am acquainted with a number of families that have children with seizures. Recently, the daughter of one of these families came to me in tears. It seems that she's been experiencing seizures at school and kids are teasing her about them. I tried to help as much as I could. I told her that what she possesses inside her is more special than her seizures, and if they couldn't see her beautiful light, then just forget them. I don't know if it helped. I hope it did. It's just...where do people learn to be like that? How many times have I been at the store and been judged by those around me because my daughter is having a meltdown? How many times has she been called out for being different? Why is it culturally acceptable to make fun of people with special needs? Why is there still a stigma attached to these conditions?

The truth is that those that float the mainstream are missing out on one heck of a ride elsewhere.

You have to hang on to that light inside you, always. Don't let anyone ever take it from you because they've honestly not done anything to deserve it.

Seventeen Months

What is this?  Another blog posting from the elusive Epilepys Really Stinks Blogger?  Well, yes.

It's been seventeen months since Liz had her last seizure.  That's the best she's done in, well...ever, actually.  That's not to say there hasn't been issues, but I don't think they're seizure related issues.

In April, she experienced some, for lack of a better term, stuff that I couldn't explain.  Violent bursts of temper, emotional outbursts, and acting out in troubling (and weird) ways (Ex. I walked in on her spreading poop all over her bathroom walls and toilet.  She promptly was given a stern talking-to, and a sponge with some cleaner.).   I called her neurologist, and explained what was going on to him.  He suggested that we see a pediatric psychiatrist, since he didn't believe that her actions were related to seizure activity.  He said that in a lot of pediatric epilepsy cases, the children also experience psychiatric issues.  So, I got on the phone to the insurance, and made her appointment with the best pediatric psychiatrist in the area. 

Now ask me when her appointment is?  Big Hint:  Notice I didn't say "was".  It's July 20th.  Fact is, when you get an appointment with a good pediatric psychiatrist, you wait for your appointment.  In the meantime, she was still having issues, so I was faced with trying to find ways to deal with and cope with her chaotic bursts. 

This is going to sound absolutely INSANE, but I turned to acupuncture.  In January of this year, I was diagnosed with Fibromyalgia (which, by the way, also really stinks).  Instead of taking the nasty medications that my doctors wanted me to take, I turned to a more natural way of treating it.  I did what I do best, and turned to the internet to research ways to treat the pain and weird symptoms of this condition.  The one I came across consistently was acupuncture, so I did some more research and found an absolutely fabulous acupuncturist in our area.  I now see her about every two weeks, and when I told her about what was going on with Liz, she said, "Let me work on her!"  So, she did for three sessions, and it has helped SO MUCH.  Liz doesn't mind the needles, and at the end of her session, she can tell the difference in before and after.  She knows when she needs it, and I let her make the decision.  She still has bursts of odd activity and temper, but it's fewer and far between than it was before. 

So, that's the gist of it.  She's not had seizures in a LONG time, but she's still going through some weird stuff.  My fears get the best of me sometimes, and I worry that she'll be diagnosed with Bipolar Disorder or an anxiety disorder.  My gut tells me it's related to her ADHD diagnosis, but I'm, of course, not a doctor.  We'll see in a few weeks what the doctor thinks. 

Thanks for reading, and have a great 4th of July!!