Saturday, August 30, 2008

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.

Tuesday, August 26, 2008

first day of school 2008



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

Monday, August 25, 2008

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.

Friday, August 22, 2008

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.

Thursday, August 21, 2008

bad news

Neurologist just called.
My boy has epilepsy.

Wednesday, August 13, 2008

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.

Tuesday, August 12, 2008

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!

Monday, August 04, 2008

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.