october 2008

I have a child, who at the age of three, said he wanted to be a “coffee table” for Halloween.
This Halloween, the same child, proclaimed he would like to be Samuel L. Jackson.
Tomorrow, we will shave his head and try to make him look like a black man.
Meanwhile, the changes in the baby’s diet seemed to have made remarkable improvements in his behavior and speech. At first we thought it was too much of a coincidence….one week off of dairy and a restriction in carbs and he started to speak gangbusters.
Thinking it may have just been a fluke, we put dairy back into his diet and just took it easy on the carbs and he went back into his own spacey destructive mumbled world.
So my baby is starting to peak through his clouds…and has turned THREE!!!

not exactly Anne Geddes...

Whoever has the most sleeping eating baby videos -- wins!

you think you've got problems....

Yikes.
In my search to find someone dealing with the similar issues as me, I joined an "ecommunity" for people dealing with seizures and epilepsy.
I posted my question about one seizure, abnormal eeg etc, why medication? .....

Some of the responses go something like this....
"Wow! I could have written this myself. I know exactly what you mean...."
Oh wow, I think someone with a similar experience.
And then ominous musics inserted here...

" when I got the EEG report, which states ... "As the day progressed the background became more symmentrical and less of the epileptiform discharges were identified", and the day after the seizure on 7/3 "This slowing may well be seen as a post-ictal finding and has improved from the beginning of the recording."

I know; I can see your eyes crossing from here.

This was written by a mom who's profile reads like this....
Single Mom to L... complex partial with secondary generalization to tonic clonic activity. Stopped Keppra (imagine a 6 year with PMS), failed Trileptal (rash), stopped Depakote (extreme intestinal issues), and back on Clorazepate (Tranxene). Stalling on starting Topomax, since there has been no seizure activity since the first one (knock on wood)

Yikes. She is a lighter version of what people struggle with. Some people cry out on the boards as they take their children in for brain surgery. Kids having big seizures everyday despite numerous medications and/or surgery.

I have just hit a little rough spot in trying to figure out what to do with my kids and our life. Between KC's developmental issues and now K's seizure, it is all I can do to keep us all alive. I've found myself angrier than normal, and I take it out on the four guys I love most in the world.

mean and nice ladies that answer phones

Someone sent me a prayer she said/written specifically for K.
Somehow made me feel better.

I cancelled my Cleveland appointment to get a second opinion. Even though the appointment was with the Ped. Neurology Division Chief, and those nice ladies that answered the phone got me squeezed in before the end of this month.

I've realized that on the other side of town is Emory and their pediatric neurology folks. Though I can't get in until JANUARY.

We still have to follow up with our nurse practitioner at Child Neurology Associates in the meantime. I called to schedule his next appointment and asked if I could see a real doctor this time instead of a nurse practitioner. Not that s/he would be any better, smarter, kinder. I would just feel better if a second set of eyes looked at his info. A not so nice lady that answers the phone was very inconvenienced by me because it would require her to fill out a form for it and I'd have to state my reason. You know how sometimes you get luck of the draw with your call....well I got the a rotten one. She indicated that they may deny my request to switch doctors. So much for partnering with us in the care of our son.

In the meantime, I have this book written by the the Johns Hopkins folks. It has educated me on a ton of stuff. After reading it, I feel more confident in our decision to hold off on the meds.

Baby KC will be cycling into the county school system soon to begin more therapy. The developmental pediatrician confirms he does have Apraxia. We will have to continue to monitor him during his school years because many kids have learning disabilities.

He has the comprehension of a 3.5 year old, but the expressive language skills of a 21 month old to a 2 year old, which really, I knew he was about a year or more behind on his speech.

He also took another hearing test yesterday. The audiologist passed him through on the main part but will have to see him back for more testing since he either can't hear the softer sounds or his attention span is short.

ugh....this is the short version of the update.
maybe a more creative blog entry another day.

By the way, our middle son makes us proud. Let me just say this loud, Q has no medical or developmental issues. The teacher's assistant says he eats every piece of food on his lunch tray. We are so very proud. Every little bit of joy helps.

confusion

Should I get a second opinion on K?
Does he really have epilepsy?
Does he really have to take the medicine?

I made an appointment with a doctor at Rainbow Babies in Cleveland.

Hunka and I agreed we are not giving him the meds unless he has more seizures.

He can move on. I can't.
I still wonder if it is the right thing to do. Is there anything I/they are missing?

My brain is overloaded.

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.