Answers never come easily

When Emeric's Epileptologist said he thought the coordination/balance issues could be migraines I thought there was no way. He does seem to be hurting during these "episodes" but usually points to his legs or grabs at them, not his head. But, then last night he was having a lot of difficult walking and started throwing up. I figured he was getting sick because it's been going around. He threw a couple times and started retching for a bit and then fell asleep and that was the end of it. Now I'm wondering if the doctor is right and he may be having migraines. Vomiting is common, especially in children, and he seems fine today.... It is early so I guess maybe it's too soon to tell. I would hate for him to be having migraines but at least if that were what it is it might be more easily treatable than something else.

We also got the official results of Emeric's last EEG and it has changed since the previous one. Good thing is he had no seizures but he has diffuse slowing for his age and disorganized, high voltage discharges. In simple terms, it's abnormal. It's hard to explain but essentially it's just kind of a crappy EEG. When I called to talk to the nurse she just kept saying that the doctor pays more attention to the child than to what the EEG shows and Emeric is doing better than you'd think he should be based on what his EEG shows.

Emeric fits closely with something called Lennox Gaustaut Syndrome. You can read more about it here. He has not been classified as having it simply because his seizures are not as frequent or severe as typically seen in LGS but the doctor said he is treating him the same way he would treat a kid with LGS. He has some of the seizure types seen in LGS, his EEG fits closely with LGS, and he is developmentally delayed.

I don't mean for all of this to sound so negative but it is what it is. I know people would rather read about all the positive stuff and I would rather post about the positive stuff and I hope that when things are going well that I remember to talk about that too but for now this is what's going on.

I emailed a video of his walking to his doctor in Houston in hopes that maybe she'd have some ideas of what is going on. I'd love to hear from her today but you know how doctors are! ;)

Mattie Stepanek

My grandma called me the other day and asked if I saw the story of Mattie Stepanek on Good Morning America. I had remembered vaguely hearing about him but did not know his story.

Mattie Stepanek died at the age of 13 from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy. Mitochondrial diseases fall under the umbrella of muscular dystrophies. His mother lost 3 of her children and then went on to develop the adult onset form of the disease and now spends her days in a wheelchair and on a ventilator. She did not know when she had children that she would pass this disease on to every one of them. Her story & Mattie's are incredibly inspiring. This little boy touched more lives in 13 years than you can even imagine! He had books on the New York times bestseller list and wrote a book with Jimmie Carter. He spoke about peace and hope.

When the moon sets

Over your shoulder

As the sun rises

Bright towards your face,

What's in the middle?

Your life is.

Filled with choices

For each moment, each place.

We live between the Past and the future,

In the moment of our

Here, now, today.

Can we cope with the

Daily life stresses?

If we humbly accept.

We must pray.

December, 2001

© Matthew Joseph Thaddeus Stepanek

Used with permission from Hope Through Heartsongs, Hyperion, 2002

His mother recently did an interview for GMA and you can watch the two videos here. They really give you a good idea about Mattie's outlook on life and are incredibly inspiring:

http://www.myfoxdc.com/dpp/news/local/mattie-stepanek-mother-book-release-110309

On September 11th, 2001 Mattie wrote this poem:

We need to stop.

Just stop.

Stop for a moment.

Before anybody

Says or does anything.

That may hurt anyone else.

We need to be silent.

Just silent.

Silent for a moment.

Before we forever lose

The blessing of songs

That grow in our hearts.

We need to notice.

Just notice.

Notice for a moment.

Before the future slips away

Into ashes and dust of humility.

Stop, be silent, and notice.

In so many ways, we are the same.

Our differences are unique treasures.

We have, we are, a mosaic of gifts

To nurture, to offer, to accept.

We need to be.

Just be.

Be for a moment.

Kind and gentle, innocent and trusting,

Like children and lambs,

Never judging or vengeful

Like the judging and vengeful.

And now, let us pray,

Differently, yet together,

Before there is no earth, no life,

No chance for peace.

September 11, 2001

© Matthew Joseph Thaddeus Stepanek

"Hope is real. Hope is an attitude and attitude is a choice." Mattie Stepanek

Epilepsy Through The Ages

Understanding Epilepsy (Epilepsy #1)

This is the 1st of a series of videos that I think are very informative in terms of understanding Epilepsy and seizures. I hope you'll take the time to watch!

Epilepsy Awareness Month

November is Epilepsy Awareness month & after a conversation I overheard when we were at the Mall of America last weekend I realized how much people still do not understand about Epilepsy so I have at least a few posts planned in hopes of educating people about Epilepsy!

Emeric, Kaydence and I(Jake and Kylie were on another ride) were standing in line for a Ghostbusters ride and there was a sign on the door that said, "Warning, strobe lights are used on this ride" and I overheard two women in front of me talking and the conversation went like this:

Person 1: I wonder why they put a warning about strobe lights being used?

Person 2: Oh, it's because people with Epilepsy have seizures if they look at flashing lights. You can't even use a flash around a person with Epilepsy or they'll have a seizure. They'll start going like this(and then she demonstrates someone convulsing).

They continued their conversation for a couple minutes while the lady told her(wrongly) that all people with Epilepsy will have a convulsive seizure if they see any flashing lights.

I thought for a second about tapping her on the shoulder and telling her that only people with photosensitive Epilepsy have a seizure when they see flashing lights but I figured it wasn't really the place. LOL These women were at least in their 40's though and it made me realize how many people really don't know much about Epilepsy.

A lot of people that think of seizures picture a tonic clonic seizure where the person is stiff and convulsing but that actually is not the most common type of seizure.

So... with that said I hope that some of you will be willing to ask questions and come back to learn more about Epilepsy!

Telemarketers

Telemarketers think they're so sneaky. First one called this morning and asked if Jake was home. I said no and asked who was calling. They told me and I said they can call back tonight. Two minutes later the same number pops up on my caller ID! I ask who is calling and they won't tell me. They said it's a "personal business call". Yeah, ok. I say, "You JUST called here and I told you to call back tonight!" and they hung up!

I thought about calling THEIR number back!!

What do you do when telemarketers call? Are you nice and stay on the phone? Do you hang up? Do you tell them a joke? What do you do?

Do you vaccinate?

With all the H1N1 craze going around it seems like all people are talking about are vaccines. So, do you vaccinate and why or why not?

Kylie was fully vaccinated up until 18 months and has not received any boosters. Kaydence was vaccinated until 12 months but did not receive her MMR. Emeric had his 2 month shots and has had no more.

I wish I'd been more informed when my girls were young and I would not have vaccinated them. When Emeric was born I felt much more informed and decided I was not going to vaccinate him and then my doctor pressured me into having him vaccinated. Two days later he had his first seizure. Now sure it may seem coincidental but I can, off the top of my head, think of at least 10 children whose seizures were triggered by vaccines. A lot of the ingredients in the vaccines including aluminum and formaldehyde(among others) are known neuro toxins. It's unclear whether the vaccines themselves triggered Emeric's seizures or fever caused from the vaccines.
Whatever the cause, none of them will ever receive another vaccine.

So, with that said I'd love to hear your stories and opinions!