What a Nice Time

>> Monday, July 30, 2012

Seattle showed us a few seizures but they were...odd...for Bug. He had ONE Tonic...in 4 days. NOT bad. BUT, he had 3 Complex Partial events. In an hour. At the Red Robin. Odd.

Since then, and we returned last Tuesday, we have seen one minor one a day. NO Tonic/Clonics.

And then there is yesterday.

He has been sleeping well, taking naps, and smiling. He has been 'talking' with his mouth closed, like he used to do when he was 2. He has said: Mama, although not as clearly as he has in the past. It is the constant verbalizations that have been so wonderful. He is talking to himself, chirping, mumbling and seeking out people. He will sit next to someone, or stand in front of them and make them LOOK AT HIM. He will grab our faces and turn them to face his and then...he yammers something.

I haven't been this excited in years. YEARS.

But he has a runny nose. And that's gross. But, so what? Please let this continue. Please?

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301

>> Wednesday, July 11, 2012

So funny to me, that my 300th post was a poop post. How awesome is that? So goodbye celebrating 300 post and hello to 301.

He had two seizures today, one in the early morning and one before bedtime, right after his 8pm meds. Bummer. But he was very playful and energetic all day, so...cool anyway.

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K...gross

Taylors positive spin went like this:



At least we have 2 year old Bug back.



She was trying to stop me from crying....I was a little close but I have been through this so much before, I knew to shove the emotion aside and just get to cleaning up. If you have a sensitive nature, get squeamish or have an over active gag reflex, do yourself a favor: don't read further, it's oh, so not pretty.



Bug was sitting next to me, being cute, and then he started holding his breath followed by slight grunting. What I SHOULD have done is run him to the potty, and believe me, next time, he even blinks long I will, but I didn't. But no, I just thought: cool he's making noises. I will just change whatever he makes.



I wasn't fast enough. As soon as he got done, he, very slyly, moved his hand toward his diaper. In an instant, his hand was in his diaper and then immediately in his mouth. IN his mouth.



I know: gross.


I grabbed him and hollered to Tay to fetch me a few things...it's when she came over to help that she uttered that now familiar mantra. I just smiled, Ava cried and Taylor cringed, but helped me.



Bug received his second shower of the day and we took Tay to Karate.



When I get home, I am taking a bath. After I mow the lawn and get everyone fed. And...Bug is going to sit on the potty with no toys, until he drops something in the water or I can't stand anymore.



At least we have 2 year old Bug back.




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Speaking of Dravet

>> Tuesday, July 10, 2012

FOR IMMEDIATE RELEASE


DR. DRAVET TO VISIT SALT LAKE CITY: REACHING OUT TO THOSE AFFECTED BY EPILEPSY

Salt Lake City, UT June 21, 2012 – At the invitation of the Epilepsy Association of Utah, world renowned French Epileptologist, Dr. Charlotte Dravet, will visit Salt Lake City on August 15-18, 2012. Dr. Dravet has agreed to meet patients affected by Dravet Syndrome, a rare form of Epilepsy named after her research efforts. Patients are invited to meet one on one with the doctor on Monday, August 13. Dr. Dravet will also be presenting an “Introduction to Dravet Syndrome” on August 14 from 9 – 11am for all medical professionals wanting to attend. Please RSVP to this event by visiting www.epilepsyut.org/dravet_registration.html.

“The opportunity presented to the people and medical community within Utah is unparalleled”, said Kris Hansen, President of The Epilepsy Association, “Never before has the Epilepsy Community in Utah had the occasion to meet someone of her caliber. We are honored that she agreed to spend so much time here. It’s a once in a lifetime chance”.

Schedule of Meetings/Events

Monday, August 13:
9:00am – 4:00pm     Patient Visits at University of Utah


Tuesday, August 14:
9:00am -11:00am Introduction to Dravet Syndrome
Dr. Dravet presenting along with doctors from UofU and Primary Children’s

12:00pm Lunch – By Invitation Only
2:00pm University of Utah Research Lab Tour
7:00pm Dinner with Dr. Dravet - A minimum donation of $75.00 a plate is suggested

Wednesday, August 15:
10:00am Grand Rounds at University of Utah

If you would like to participate in any of these events or have any questions, please contact:

Jenn Whiting
jenn@epilepsyut.org
or
Kris Hansen
kris@epilepsyut.org

(801) 566-5949

ABOUT DR. DRAVET
Dr. Charlotte Dravet was mentored by Dr. Henri Gastaut (Lennox-Gestaut Syndrome) at the Centre St. Paul in Marseilles. Her interests were focused towards the explanationof syndromes in childhood Epilepsy, the psychological consequences of Epilepsy, the progressive Myoclonus Epilepsies and their genetics, the congenital malformations of the offspring of Epileptic women and related studies. Her main contribution was in Myoclonia Epilepsy; with emphasis on benign and severe Myoclonic Epilepsies in infancy. Dravet Syndrome, is now recognized as one of the most malignant syndromes at this age and is widely studied by other authors and clinicians as well as geneticists.

According to Davet.org, “Dr. Charlotte Dravet first described Dravet syndrome in 1978 as Severe Myoclonic Epilepsy of Infancy (SMEI). The first seizures usually happen before one year of age, with no known cause other than fever or illness. Seizures progress to be frequent and do not respond well to treatment. They also tend to be prolonged, lasting more than 5 minutes. Other types of seizures, which are common in Dravet Syndrome, appear in early childhood, including myoclonic seizures, atypical absence, complex partial seizures and nocturnal seizures. Estimates of the prevalence of this rare disorder range from 1:20,000 to 1:40,000 births.”

Dr. Charlotte Dravet has been President of the French League Against Epilepsy and a member of the Commission on Classification of Epilepsies of the ILAE. She has participated in numerous congresses, lectures and is the author of a number of published works. Now retired, she continues to work in France and Italy to improve the care of people with Epilepsy.

ABOUT THE EPILEPSY ASSOCIATION OF UTAH
Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 150,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp, and more. Visit http://www.epilepsyut.org for additional information.

Press Contact: Lindsey Palmer
Email: lindsey@epilepsyut.org
Website: www.epilepsyut.org
www.dravet.org

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Never fails

When I say: Things are going great! They turn into an ER trip. NEVER FAILS.

The upside is he only had one seizure. The downside is that one seizure was too close to the fireplace. We have the fireplace padded, as much as I could pad it, but when he has his Tonic seizures, his arms go straight out and then he rolls onto his backside. It was this action that made his head flop under the edge of the padding and strike the rock. It was a glancing blow but even glancing blows on the head bleed a lot. And it did. Glenn got to him before it got everywhere and he came out of it almost immediately. Which is good and bad. Good because it was NOT a bad seizure, bad because he was fighting us putting pressure on the wound and then escalating the battle slightly when we tried to look at it. Glenn and I both knew, as soon as we saw him hit, that it was a staple run.

We got to the ER and, start to finish, it took them 35 minutes. One staple. One. Easy peasy. Kinda. And I met Georgia, her boy has Dravet Syndrome and he had a lot of stitches tonight. Seizures suck. Bad. They Suck Bad. Ly. They suck badly. Yeah, that's it.

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What's the difference?

I can't help but wonder why, some days, he has so many seizures and others...nada. I understand that it may all be an imbalance. It might all be that when his immune system is taxed he seizes more, or that his Central Nervous System is so sensitive that ANY change can cause him to seize. Whatever the real reason, I am grateful for today.

Today, we have NOT seen a seizure. I may jinx it with that but still...so late in the day and NO events. Kinda cool. Hoping for a peaceful evening.

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Costco brings out...the worst?

>> Monday, July 9, 2012

We ran to Costco to get some things that are better purchased at Costco when there are 5 in the family, and no sooner were we in the door when Bug went Tonic. It was an intense one. He threw his toy, didn't mean to, mind you, he couldn't control himself. It flew and landed with a resounding clank! It got attention. One woman stared and continued to stare for a few seconds, when I said, out loud:

He always seem to have a seizure at Costco.

She may, or may not, have heard me and really I don't care if she did. I wanted to say something else, but I held my tongue. HELD IT. No smart comment just a simple one. And a true one. He does. He does seem to have a seizure every time we are there.

It made me recall when I was pregnant with him. Anytime I went into Costco I would get sick. I would be really dizzy and feel like I was going to fall down. I could not get my bearings about me. Why would that be? I haven't done it since. Incidental, maybe, but hell of a coincidence.

It lasted about a minute and took him a good 3 minutes to fully come out of it. After which, he was playing and smiling a little but still just a little off. He was very sweet with Ava. She wanted his toy and he let her have it a few times. Luckily she has the attention span of a pea and he got it back fairly quickly.

I gave him a full tablet of Clonazepam with his regular meds. We HAVE to stop these damn things. Have to.

Oh, and aside from the rude staring, later, we were eating hot dogs and salad...cuz why not? and Ava dropped her toy (for about the 100th time). It rolled over by the trash can where a man was standing. He looked down at it, and then looked at me trying to move Bug to go get the thing and he stepped over it and walked away. His Momma done taught him wrong, she did. All I could think of was WWJD? I can't help it. We live in Utah County, the epicenter of 'what looks good, must be good' and I can't help but to pass my own unrighteous judgments now and again. So I thought: And THIS is why it's more important to be a kind and helpful person than to just make sure you attend Church regularly. Church attendance alone does NOT pay the price of admission when you step over someone that needs help. As small as it may seem, these are the things that add to the tally. And what is Church for but to learn how to be good to one another? He's minus one tonight.

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A run and then the crash

For 3 days Bug had ONE small seizure a day. Whoopee! And then...Sunday hit.

All I can say about yesterday: God REALLY does not want Bug to go to church.

We awoke to him falling down the stairs. Glenn jumped out of bed and found him sitting calmly on the landing. When he brought him to our room, his lips were blue. Yah, sure sign of T/C. How did we miss this? His camera is not recording so I couldn't go back and look but still...didn't need it.

He fell back asleep next to us and then...another milder seizure. I gave him his meds a little early and he slept a while longer.

He had another one later in the day so 3 total, that we saw.

We need to get these damn things under better control, he is not making noises again AND he is manically spinning off and on. SO, I either wait until October, especially since the Leucovorin has only been high enough for 2 weeks and on it for 6 weeks when it can take 4 months to build up enough to make a difference, OR...I sacrifice chickens.

On a side note: Taylor does not carry the Folate Receptor Autoantibody. We had her tested to...well...be sure and to make sure that she is not having any tangible issues. Just little jealous ones.

I am insanely pleased that she is negative. Insanely. Now...to wait it out with Ava. Sigh.

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Is there an echo in here?

>> Thursday, July 5, 2012

The words: This may not help his seizures, have been resonating in my brain. Over and over, with each seizure I see a little less hope slip away and those words keep repeating themselves.

And then, he puts himself to bed.

Again, not a big deal for some 9 year olds, also a big deal for some 9 year olds, with or without cognitive problems. But a super, ultra, big deal at our house.

He has been averaging 3 seizures a day of varying intensity and type. Some are quick, and others suck in a major way. Take those seizures out of the equation, and he is doing well. Minus the food playing and toy dropping. He is manipulating his environment, going down the stairs using every other foot (not always but 50% of the time maybe), he is watching Sponge Bob and he is running. Running. And not just when he wants to get away. He runs to chase people, he runs to get to Mom and/or Dad, and he smiles.

He smiles from the soles of his feet, his toes feel it, and his eyes shine with it. It feels good, for that fleeting moment. It feels really good.

Last night, we let him stay up as late as he wanted. He made to about 11:45 when he disappeared. I went to check on the baby and, what I thought was a sleeping Bug in our bed. He wasn't there. I looked in the closet (he likes the solitude and it's a pretty big closet): no Bug. So I went back into our bedroom and looked at the monitor. There he was. In his bed. Asleep.

A shiver of excitement passed down my spine and I went into the kitchen to show Glenn. We both sat amazed at what we saw. And we smiled. A smile from the soles of our feet and our toes were very happy. Good job Bug, now stop throwing food on the couch.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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