seizure freedom

K has been seizure free for the past month.
Now only one year and eleven months to go before the neurologists office will give us a pass on having to take the meds.
I spoke with a kind woman at Johns Hopkins about K's situation. I suppose her job is to gatekeep people like me from flocking in from all over the country pounding on their doors. They are rated as the number one hospital and staff dealing with pediatric neurology.
She took the time, listened, answered and asked questions.
I explained my hesitancy on starting K on the medication. There isn't a soul on this planet that wants to prevent another seizure in that kid more than me, and it is not that I'm trying to get all freaky Christian Scientist and avoid all medication. If he were to have more seizures, I'd say let's do it.
"I think you have your answer right there," she said.

I took K for acupuncture. The Chinese doctor did agreed with me and interestingly said K should take the Keppra if has more seizures. I was actually glad to see that he did embrace some western medicine too.

We talked to the nurse practioner again by phone yesterday she was pretty adamant about him taking the medication. While my gut still tells me to wait and see if he has another one, it makes me question if I am doing the right thing.

first day of school 2008

First day of 3rd grade for K and first day of kindergarten in the public school for Q.

for today

Today I will not write about seizures, neurons or speech delays.
I will think about them to be sure. But the blog, oye what a downer it can be...
For now, everyone is safe and healthy.
K and Q have taken the bus to school. They both have a love of school and learning, for which I am grateful.
KC has done another pee pee on the potty and is watching Thomas as a reward for a job well done.
Today I will excercise.
I am wondering why I haven't had a decent tomato out of my garden all summer.
I planted a yellow squash took over my raised bed with large leaves the size of basketballs. I suspect this may not helped the other plants thrive. Day after day we ate yellow squashed sauted with onion in olive oil and garlic. But not a tomato, cucumber or pepper to round us out.
Balance, it seems is what we lack.

fits of denial

So the neurologists office says our boy has epilepsy, specifically "partial seizures with no known cause."

We are in the market for a second opinion. If anyone knows a good pediatric neurologist, let me know.

Here is what she said:

* His MRI is normal.

* His EEG indicated abnormal electrical activity
* Indication of an increased risk of seizures.
* They want to put him on meds
* He would need to be on the meds until he is seizure free for two years.

What I know:

* He has had one known seizure.
* She (this nurse practitioner) believes he has night time seizures. Her question was probably protocol, but very leading ...."Have you ever woken up and your arm, hand, legs or feet felt weird?"
Curiously he said, why yes as a matter of fact that does happen. hmmm
* Now I have my doubts about this admission, because hello, haven't we all woken up at one point and had our arm feel weird? The night after he told me his hands didn't have feeling in them, I checked him while he slept. He had two hands balled up and rolled inward on his wrists and then had his big ole head on top of them.
* Last night, I checked on him about 1am and he was sleeping with his head on his arm. and voila, this morning he doesn't have feeling in his right arm. Can someone get his kid a pillow?
* We don't want him on meds based on the information we have now.

I should have known something was up. The folks at Google Ads seem to have premonitions....I talk about KC's speech issues....and presto ads for speech development and DVD's that teach your baby to talk . The folks at Google Ads started placing ads for pediatric anti-epilespy medication, Keppra as soon as I mentioned seizures. Ironically, when the NP asked if I had ever heard of the medication, I had to admit it was my own stinking blog that taught me about it. feel free to click on my ads, it just may pay for our next EEG.

bad news

Neurologist just called.
My boy has epilepsy.

EEG day!

K's EEG is scheduled for tomorrow.

He needs to be sleep deprived, oh how I wish that were a thing we could just donate to him.

a simple goal

The first time I was left alone with my toddler and a newborn under my care, my mission was clear...I had to keep them (and myself) alive. period
Even now after we've added a third son and a dog to the mix, at the end of the day I am usually victorious in accomplishing my mission.
It has become my daily mantra....surviving

K woke today telling me that he didn't have feeling in this hands and had a hard time moving them. La-la-la....excuse me.....denial can be a beautiful thing.
I've found a study at Columbia University that I may consider, if in fact he has this form of epilepsy.
Considering that I have wrung my hands for a year over the baby's speech issues, this initial finding that made me sit up a little straighter.

Speech and Reading Disorders in Rolandic Epilepsy Families

We have also found, for the first time, that the reading and speech problems found in RE children also occur in their relatives much more commonly than in the general population. This suggests that speech problems, reading problems and rolandic epilepsy are all transmitted together by one or a combination of genes. This is a valuable clue for tracking down the genetic influences on all three disorders.

Q had his second full day in the public school system and declared that he wasn't that crazy about the bus, after all, or at least some of the people on it.
And the baby, we are on our 9th straight hour of a Thomas the Tank Engine DVD. He is alas, a barfy sickly boy.
But we are all alive!

fits of joy

update after our neurologist appt

We are back from our visit to the neurologist. The office is located in a brand spankin new pediatric medical building in our part of town. The neurologist's office is located directly across the hallway from the chapel, which I found disturbing and comforting all at the same time.

There may be a chance that K has had these seizures before while sleeping. Which, hello, how would we ever know? But based on a specific set of Q & A...we discovered he occasionally has had similar weird feelings when he wakes up. She said there are some seizures that happen only when asleep.
In retrospect, I kept him in bed with me the night he had his seizure, so I could keep a closed eye on him while sleeping. He did wake me up that night saying that his arm felt weird, I just told him he must have slept on it funny and told him to go back to sleep. So much for keeping an eye on him...just another point in my quest for Mother of the Year.
We will have to have future separate appointments for the MRI and EEG, which K was disappointed about, since he was hoping he could do it all today. He thought his CT scan was especially cool, because it is like a little bit of star wars/star trek technology.
What he had was a partial complex seizure and they suspect he may have "Benign Rolandic Epilepsy", though we won't be able to say for sure until hey finish more tests.

They have a prescription for Diastat, which is sort of like an epipen for seizures. Again it is an only in case of emergency, since it has to be given rectally.

I believe that this was just a misfiring of the brain's wiring. I'm not convinced of this nighttime seizure theory. Perhaps I am in denial, but it hard to believe there is something wrong with a kid that just seems to be so okay.

Tomorrow, the baby and I will head to the developmental pediatrician to figure out what we can do (or not do) about him.

left right left

When I was a child, I remember the first time my mom let me walk to town. It was one block away, and in my small rural hometown of Beach City, Ohio, it measured less than a football field in distance. I had to cross one major road to get there.
"You have to look left, right and LEFT again," my mom said as she sent me on my maiden solo voyage to the store.
"Left, right, left, right, left, right...." I chanted turning my head continuously as I crossed just in case a sneaky car sped up in an attempt to run me over. Back and forth, back and forth, just to be sure.

Recently while turning my motherly head back and forth while protecting each of my ducklings across the road, my gaze got stuck on the poopy 2- year-old kid with the speech problems.
While my eyes were fixed on him, my oldest K got struck by a seizure.

Life has a funny way of doing that.

So we checked into the ER with our frequent shopper card, CT scan and blood tests proved to be normal, ruling out the real scary stuff like tumors and watery brains. We will see a pediatric neurologist in a week for more tests.
He is fine. And has been ordered to rest for 2-3 days, and he is clearly not a child that wants to rest. And he has two brothers that do not want him to rest.
tbc

update on kc -- july 08

I have a shocking diagnosis from the pediatrician that I know is wrong. I can't even say what it is because, I swear it is just for insurance purposes. I swear it.
We will go to see a developmental pediatrician next month.
In the meantime, our silent baby appears to have turned a corner. He has picked up new words and phrases and has started to sing songs, kind of.
Upon the advice of a wise friend, I have changed his diet. Eliminating dairy, processed foods and white flour.
He has also started with an new oral-motor therapist who really gets in his face and makes him do all sorts of weird slobbery exercises.
He seems more connected and present. There really is a boy in there.

chaos

This house is slowly, OK, not so slowly, descending into chaos.
And hey, I'm the first one to say I thrive on the stuff, after building a career that gets it's jollies on the uncontrollable fast-paced uncertainty of breaking news.
The screaming baby just ran by chasing the dog. He was hollering about the injustice of it all and I could have sworn he mentioned the cat.
I had given the dog a small can of uneaten cat food that, Baka, the senior feline of the home had turned his nose up to.
Leo had taken off running with it in his mouth as the small prize of a life well lived in the house of pain. Forward to me trying to wipe up the small bits of fishy foulness that had become mashed in the fibers of our carpet.
The baby, who can hardly be the judge of all right and wrong in the world, has proven that diapers, clothing, sheets, mattress pads, stuffed animals...are ALL disposable. I shake with fear when I approach his room because due to his potty training efforts he has, let's just say, insisted on spreading the 'love' around. "When will the shit stop!?" I yell in a weary way that only moms can understand. As I pull more Lysol, vinegar and the steam vacuum from the corner of the room.
He also succeeded in pulling a branch I had hung from the ceiling....it was assembled ten years ago filled with multi-colored origami cranes with sweet wishes written by the guests at our wedding. "Many children and a long life," reads one. "Patience and kindness," implores another. This branch has hung in our home for TEN years. It has hung over the bed of two other children. But this two year old pooping tower of power has somehow managed to pull it from its perch -- 9 feet off the ground.
One child broke the other's light saber...the special one that lights up and changes color depending if you are a Sith Lord or a Jedi Master. The saber of power that makes the "whooshing" and clashing noise.
The grass in the backyard is so high, I'm never sure where the dog or smallest child is when they go out.
The baby thought the cd player in the van looked like a vending machine, and so everytime you start the car the player grinds through 89 cents of coins.
The middle child broke our garage door.
And the laundry, oh heck, did I mention I haven't showered in two days?
And yet....I will go upstairs and shower and read a book, because it is what I need to do. for now.

Shiny happy people

The universe is forcing me to look on the bright side of life. The message even comes through the eggs. Of course by the time I found the camera, my yolky friend had changed his expression into a smirk.

potty time

The baby has decided to potty train himself. I suppose he thought someone should get around to it.
more on this....later

What sells...

Say what you will about Hillary.
But this kind of stuff saddens me as a woman and sickens me as a mother.
My first reaction is...I suppose it is better that I don't have daughters.
But the reality is...My job is much bigger. I have the responsibilty to raise three men to be intelligent, respectful and advanced.

Math formulas

I have a mathmatical formula for the amount of time it takes to get out of the door.

Figure five minutes per person.
So from the time I say, "Let's go. Get in the car," it takes us about 25 minutes. By the time everyone finds his shoes, goes potty, gets a drink, sends an email, writes a novel....five minutes per person.

I think you will find my formula pretty solid.

Now throw in a trip to the YMCA outdoor pool, a workout and a packed lunch....the formula expands. It took us 55 minutes, and that was only with four of us. And I still forgot the lunch in a cooler in the garage.

I wish I could do it better. I wish the kids would listen to me the first 25 times I told them something. I wish I were the Zen mama I long to be.

Because you see i have another formula, it takes saying something THREE times, before it is understood. Sometimes I skip right to the end and put on my mean mommy voice and yell something three times....."PUT ON YOUR SHOES, PUT ON YOUR SHOES, PUT ON YOUR SHOES." I make sure I am dripping with evil venom and stink eye when I say it too.

Times my 3X formula times three kids and you have an idea where I am in the end.

I just finished reading "A New Earth" and listening to the podcasts by the author. It has really opened my mind to understanding. I get it, but the author Eckhart Tolle doesn't have children.

Jesus said, "Let the children come to me and do not hinder them." Again, Jesus wasn't around them all day, and he sure didn't try to get them all into the van in less than 30 minutes.

if i could bottle this stuff

...if i could bottle the crazy funny personalities in my life, I'd have a great SNL skit.
There is a woman that I talk to very little, in fact I try to avoid her at every turn. However I find myself cornered frequently. Even more unfortunate, K and Q are the same ages as two of her kids.
So I am amazed at what she can fit into any casual conversation to let you know how...."smart, talented, athletic" any one of her three geniuses are. Some people send those Christmas letters that detail every moment of their amazing year, well she sends that letter twice a year, Christmas and June because one letter a year couldn't cover it all. I wish I were kidding about this.
Today, we stood in the kindergarten hallway as our two boys sat coloring waiting for their screening tests to begin.
I asked her what she was going to do now that her youngest was off to kindergarten in the fall. "I'm thinking of more marathon training, since I'll have from 730 to 230 free. Or maybe I'll try a triathalon."
My eyes glazed as I slipped into a daydream about what I would do with all that new found time....after all children got on the bus, I would go back to bed, sleep until noon, watch some TV, order a pizza,...oh my options just are endless. Notice how training for a marathon, didn't even rank?
Now you should know that I am reading A New Earth, so I am on my way to enlightening living and was fully conscious that my ego may be challenged by this rascal of an earthling.

"Make sure you write first and last name," she coached her five-year-old, "upper AND lowercase."
She asked me about Q starting school and if I felt he was ready. I said he would do kindergarten again since he has his birthday a week before the cut off. (this is his first year in the public school) and I am doing this in hopes he will have an easier time with his school and social life over the next 13 years.
She then told me how her two older girls have summer birthdays, she sent them and they do fabulous. They are both in the TAG (Talented and Gifted) program, advanced math...there it was. I was wondering if she would be able to slip it in.
She hadn't heard a thing I said. What is that? my ego talking? why do I feel I must smack her.
Enlightenment is not easy to accomplish when you have kids...just look at Jesus and Buddha. Both dudes, very cool, peaceful, very enlighted....but no kids.

the baby

He can hear.
I love how I already was figuring out how to smash -- get fitted for hearing aids -- into our schedules.
I am really quite amazed how the panda playing the drums and elephants playing trumpet are ways to measure, but I think they have it down.
on to the next crisis.