Found It!

5 08 2013

For Mother’s Day, my husband bought me motorcycle lessons. He’s wonderful like that. Within a month, it felt like I outgrew the GZ 250 I’d been on. A few weeks ago, we started looking on craigs list at motorcycle possibilities for me. One week ago, we sold my 250. Saturday, we brought home my new bike 🙂

It didn’t have everything I wanted, but good golly, it was purple! How could I pass that up?

As some of you may recall, my youngest daughter was diagnosed with epilepsy when she was right years old. She’s been seizure free now for three years. At the end of 2012, it was official, she was in remission.

Why do I bring this up? Purple is the color for epilepsy.
Somehow, as luck would have it, I now have a purple bicycle and motorcycle, both with pink accessories, and both as reminders of how blessed our family is. Even though my girl is in remission, this disease is something that’s still very close to my heart.

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Thought So…

7 01 2013

http://www.bbc.co.uk/news/health-20908903

The link above leads to an article suggesting VERY STRONG EVIDENCE that migraines and epilepsy share a genetic factor.

I’ve thought the two were related since dd11 was diagnosed a couple years ago. Happily, she’s now in remission.

My reason for thinking migraines and epilepsy were related?

I have two cousins (they’re siblings) with an epilepsy diagnosis. My daughter, and then a cousin’s daughter.

The breakdown: two boys, two girls (the boys are my cousins). As far as types of seizures, using the old terminology, one of the boys had grand mal (he’s also in remission) and one has petite mal (not sure of his status). The girls are on the next rung of the generational ladder. My cousin’s daughter has petite mal. My daughter suffered from both.

A big number of migraines flood this side of the family as well. Scary, some of those migraines seem to have progressed to mini-strokes, then on to major strokes.

I’m the oldest of six kids. At least four of us (two girls, two boys) suffer from migraines. Mine come with and without auro – depends on the trigger. Ds15 has already had a few – which were scary. He also has an aura first, and his symptoms during that time mimmic stroke (messed up speech, can’t talk, numb face, numb hand), and Dd13 has had one.

Also interesting to me, many of my migraine triggers matched my daughter’s seizure triggers. In fact, the night she had her first seizure (which we believe was the worst) was the 10th day of a migraine cycle for me. I’d battled 5 migraines in that 10 day period. I’d NEVER had that happen before. That day, I finally found the trigger – the scented oil in the bathroom. It had been there for a few weeks, and seems to have slowly overwhelmed me. I closed it, and my migraines stopped. Her seizures began that night.

I hope this new information leads to better treatment for both issues. This time of medical advances and technology really is an exciting time to be alive in 🙂





National Epilepsy Awareness Month

5 11 2012

The whole month of November 😀 If you see lots of lavender/purple, it’s the ribbon color for epilepsy.

     My now eleven year old daughter was diagnosed with epilepsy when she was eight. Her first seizure was one of the scariest nights of my life. We didn’t know she’d had a seizure, we just knew we had a daughter we couldn’t wake up. She was checked out at the children’s hospital in town – shout out to Children’s Mercy! – and they determined that she’d most likely had a seizure.

FACT ONE: A very high number of the population will have one seizure in their lifetime (I want to say 90%, but my stats are a little rusty).

Because of this, they told us to keep an eye on her. Maybe this was her one.

It wasn’t.

Within a month, after several more seizures, trips to the neurologist, and a handful of tests, she was diagnosed with Epilepsy.

FACT TWO: Because of great medical advances, the medical community has gathered more information on seizures (but not nearly enough). There are now many different names for types of seizures depending on where in the brain they originate.

Or sometimes, they’re not specific, like my daughter’s. She was diagnosed with general seizure disorder, and has two different types of seizures.

FACT THREE: Grand mal and petite mal are no longer used as seizure labels in the epilepsy community, because doctors can be more specific due to advances in science.

My girl has tonic-clonic and absence. In the older terms, grand mal and petite.

In August she reached her two-year anniversary of being seizure free. Under her doctor’s supervision, we were able to wean her from her anti-seizure medication. So far, so good. We have to keep a close eye on her until the end of the year. At that time, if she’s still seizure free, her doctor said we can say my daughter’s in remission.

Not everyone with epilepsy, or with a child that has it, is as lucky. I know we’ve been very blessed. Things could take a turn for the worst at any time. I continue to hold out hope and pray that things continue to go well.

FACT FOUR: About 30% (and again, my stats are rusty) of the epilepsy population is medicine resistant.

Sometimes it takes multiple medications to control the seizures. Sometimes medications don’t work. These are the patients who most often consider surgical means for controlling seizures. Sometimes surgical implants, other times surgery on the brain itself.

For these families, I continue to hope and pray that more medical and scientific advances will happen. Sadly, Epilepsy research is underfunded. Until Epilepsy has more well-known people championing the cause, it will continue to be underfunded.

FACT FIVE: There are the same number of epilepsy cases diagnosed each year as there are breast cancer.

Didn’t know that, did you? Breast cancer receives twice as much funding for research. I understand these are our moms, daughters, aunts, nieces, grandmas, granddaughters, and friends. I’m not suggesting we take research away from them.

We need to raise awareness for epilepsy research. Our children, our elderly, and our soldiers are no less important than the women in our lives.

For more information: http://www.epilepsyfoundation.org/