As of today.....

As of  today......

He has been on the Zonegran for 10days. So far the only side effect we 

have noticed is he has been extra tired.

We can deal with that and I know that's a side effect that should

subside.

I was very hesitant to start the Zonegran. But I guess we should at least

give it try. Right?

Arthur has been seizure free for 3weeks Friday ( knock on wood)

I am always hesitant to applaud that.

It always seems that as soon as those words leave my mouth....

'he's been seizure free for.......'

He has another one the next day.

I'm sure many parents can relate

He had his two for May

He usually has two seizures every month. So I don't give the Zonegran any props

until we go a good 30-60days seizure free

Here's to positive thoughts

The song our children sing

I always amazed at my son's strength. I hear this song and see it going 

through his head.

Our kids deal with so much.

 To have a condition, that

you can't control or stop.

 To know you may never

truly stop it. 

The strength. 

It comes from some where truly special. Somewhere deep inside them.

I know my son has guardian angels

I know he has someone who watches over him and gives him strength.

Having faith while dealing with this can be hard.

But we can't lose it, cause HE is always with us

I may not always understand

I may scream

"WHY MY CHILD!?!?"

But I can't lose faith...... I just can't

To all the families out there dealing with the demon epilepsy is.....

Do not lose faith.....

Do not let it destroy you

or your family

It sucks

But it does not define any of us

Especially our children

Do not let if define who they are

No news is good news???

So after a week in the hospital. A 7 day EEG, PET scan, and MRI.

 All the scans looked normal. They found nothing. Nothing new that is going to help.

Did you find anything from all this??? Yes, there is no tumor or growth. No visible brain damage.

Which is good news.

But it doesn't help get rid of this MONSTER!!! The neurologist said,

'the abnormal activity is coming from the left temporal area"

.But, we already knew that!!!

So there is nothing they can just cut out of his brain. Which on one hand I'm glad, because the

thought of someone cutting open my kids head and removing a piece, freaks me out a tad.

AAAAAAHHHHHH!!!

That also means we have no "cause," nothing to blame this on.

I also know, from all my google "research." That most brain tumors or growths found r/t epilepsy

are benign. Once those are removed  the seizures decrease a lot if not stopping them all together.

At least that's what I read.

So now what???? What the hell do we do now????

The neuro said lets just try adding on the Zonegran. 

From my earlier post, I made it clear I had BIG reservations

about this drug. She said to just give it a shot. If I notice anything I don't like we can stop it.

Great...

So we did start it a couple days ago and so far so good.

But.... I HATE THIS!!!!

My husband and I are beside ourselves. As parents you want to fix this, make it go away.

And we can't.

Where's the line? We want the seizures to stop for him. Be able to have a normal life.

But then what if in that quest, Arthur is over medicated and has no

quality of life?

Is a couple complex-partials seizures a month better then being over medicated and

taking a risk with all the side effects the meds can cause? Things have been worse, the

seizures have been worse ( grand mal) and more often. So the meds

are doing something. Just not enough to stop the seizures all together.

We are so at a loss of what to do. We want to do the best for him. All parents

of epileptics, us including, live with heavy hearts,

And you know what???

IT REALLY, REALLY SUCKS!!

Will the seizures ever stop?
 Could he grow out of them?
Am I doing the best I can for him?

 Should I switch docs again?

Will he ever drive a car?

Will he ever be able to keep a job?

Will he ever be able to live alone?

Will he ever be able to live the life he dreams of?

Its not fair.

Epilepsy Awareness by Epilepsy Parents

Great video from 

Epilepsy Parents ( I found them on Facebook)

Enjoy

Chances

Feeling a little emotional today

and

this song just hit home so I thought

I would share it with you all

Just plain exhausted, but finally HOME

Arthur got discharged this past Thursday. The Neuro team asked how we were doing and I said,

" We would really like to go home."

They talked about needing more seizures on EEG for pre-surgical testing, but since I wasn't seriously

entertaining the idea of surgery if was fair to ask to go home.

So he had a fancy MRI done and we were out by 6pm.

It was SO nice to be home. Got one evening with the family and the next day was

a field trip and back to work at the hospital for three straight nights. UGH

Lets just say I have not caught up on my sleep AT ALL

Hospitalizations and the worry and fear that come with them, drain everything out of you.

I spoke with Arthur's neurologist via email on Friday and she said

all the neurologists, neurosurgery, etc meet on Mondays.

The go over all tests results and decide on a plan.

Then she will call me on Monday.

They still have to fuse his MRI to his PET scan, which I looked up and it's a pretty cool thing. You

really can see so much more detail that way.

So for now Arthur is back on the same meds at the same dose. We patiently wait till Monday for the results of our "week  get-away" at the hospital.

AND

Yup, you guessed it. NO SEIZURES

Life in the hospital....

Hospital Adventures

 My luxurious bed for 5 of the 7 nights

 Even the call light/remote got a mustache :)

 Not gona get out of homework

The rock star at PET scan

~~~~~~

This is a picture I took with the Ipad

This is why I barely slept most nights.

I don't know exactly what to watch for, not like it matters.

Being able to watch this 24hrs a day for 7days was....

good and bad

It was a long stay, but we tried to make the best of it

Day #5 almost over and STILL here

I really thought we would only be here a few days. I had three nights off from work. It worked perfectly. HA HA HA. Now as Day 5 comes to a close ( and still no more seizures) I've had to rearrange my work schedule almost entirely. My husbands trip this coming weekend had to be canceled. There is a good chance Arthur will be here through the weekend. Which means grandma will have to come stay will my little one at home, Daddy will come stay at the hospital with Arthur and me? I have to go to work. UGH!!!! I'm suppose to go and take care of other people's babies while mine is still in the hospital????? Mix spring break with sick kids and this mama has no PTO left. So I pray he gets discharged by Thursday and that doesn't happen.................. But we did finally get a private room!!! Yay!!!! So much better

As I sit staring at the "moving waves"

He had his last dose of Keppra 50.5 hours ago. From all I've read, it clears the system in 1-2days. So I sit with my little time bomb. My little " jack in the box." Anxiously waiting, trapped in our little hospital box, for jack. I want this to be over, I want to get the answers we need so we can get control of this monster. But I'm doing everything to go against what we work so hard everyday to achieve. It feels so wrong. The strict schedule, the bedtimes, the meds for Pete's sake.....GONE. I asked for a monitor to be hooked on him at night, seems scary to rip all his meds away and he is not on any kind of heart rate monitor. Praying for sleep

Mother's Day- in the hospital

Well no seizures = no going home. BOO. So we sit and wait. Having a child with epilepsy is like living with a ticking time bomb. The fear, the uncertainty of when the next "bomb" will go off. It's a rough way to live. Sadly a way of life we become accustom to. You never get used to it, you just learn how to deal with a little better as time goes on. ....... So I sit here waiting for the next "bomb." At least Monday brings back the neurologist and not the countless internists, neuro fellows, residents etc that are "covering" for the weekend. Granted all those people will still be around but the people that know what the heck is going on can maybe give us some answers. 

I asked one of them yesterday about the PET scan and it was like dear in the head lights......granted as a nurse that works with residents and fellows, watching them squirm a little is kinda funny.............

 Like yesterday, one of the pediatric residents was telling me how my sons heart sounds great, no murmur..etc. ( my son who had open heart surgery, my son with the murmur you can feel by touch)

 I looked at her with a little smile and said, 

" are you sure ? he had transposition." Then comes the...uh uh uh.

 Yeah maybe it's kinda mean, but I was nicely passive aggressive. Ha ha. .............

 Mothers Day was nice tho. The staff didn't bug us at 7am, meaning we slept till almost 9!! Can I get whoop whoop! My hubby and daughter came and brought me a couple gifts and spent the day with us. The Child Life staff had a little brunch and my daughter and I went upstairs and played. Then her and I walked to the nearby shopping area for some fresh air. I'm not normally a Coffee Bean gal but the coffee I got today was fabulous! It's the little things you know? Like also getting to snuggle with my hubby :) Its amazing how well you fit on a little fold out bed when you barely get to see each other. I love him more then words can express.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ *I apologize for the format of these past few posts. For some reason in the hospital via an IPad, I get no control on format and I can't add pictures. * HOPE EVERYONE HAD A WONDERFUL MOTHERS DAY

Padded Beds- still in the hospital

Well the Doc's got what they wanted.

 His night dose of Keppra was cut in half, mix that with lack of sleep and Whamo!

 A seizure.

 A pretty bad complex-partial, but it was caught on EEG. 

The plan as of yesterday was to stop the Keppra completely today and try to get a couple more events.

 Plus an MRI.

 I'm crossing my fingers that what was caught on EEG last night was enough.

 I hate that were intentionally doing this to him :( 

 So we wait, it seems to take fourteen doctors to get one damn answer around here, so who knows what will happen today. 

 It was really weird/interesting watching the seizure play out with the VEEG in the room.

 He was in bed playing games and I was in the ultra comfy bed chair(just a hint of sarcasm)next to him. I would occasionally glance at the VEEG screen and him while I watched a movie. All of the sudden I noticed his EEG looked odd/different. Like clusters of little mountains. Repetitive clusters. 

I remember thinking, 'well that's weird.' As soon as that thought left my mind the EEG went crazy. 

Filling with lines of scribbles ( best I can describe it without pictures.)

 I turned back to look at Arthur, thinking maybe he was just moving around.

 Nope....seizure. 

 The science side of me thinks how interesting it was to truly watch it play out on EEG and simultaneously in my son. 

The mommy side?

 F@&$king hates this!!!!!!!!!!!.................................

 Dealing with this, watching him go through this. Takes all I have. I want to scream at this monster, the E monster, "GO AWAY!! LEAVE HIM ALONE! GIVE ME BACK MY SON!!!!!!" this sucks.

PET Scan n' stuff- in the hospital

Well after a long night and one IV infiltrate. He is at PET scan. 

Saw lots of Doc's today and it's only noon.

 His neurologist came by, I just love her, and said they saw some of the same "abnormal activity" on the EEG they have seen before.

 It doesn't give a good picture of exactly where the seizures are coming from.

 That's why she believes the seizures are coming from deeper in the brain. 

Hopefully the PET scan will see where the seizures are originating from. 

 The way it was explained to me, the PET scan, takes pictures of the brain in slices.

 So you can really see inside the brain piece by piece. They inject a radioactive glucose solution via IV that travels to the brain. The neuro said that it is thought that the area of the brain that has seizures doesn't metabolize glucose ie sugar that way it is suppose to. So on the scan if there is an area of the brain that is not metabolizing glucose it will show up dark in the picture

 Interesting, I think....but I'm a science dork.

 The one thing she brought up that I didn't like?

 Tapering the Keppra to maybe catch seizures on EEG.

 Meaning that, tonight's dose will be cut in half and tomorrow his Keppra will be no longer. 

Yeah..... I'm still sick to my stomach.

 As other parents of epileptics probably understand, the idea of this is so scary.

 I understand why they want to do this from a medical standpoint, but as a parent it sends my nerves into over drive. 

 What brought Keppra into play in our lives was a summer of Grand Mal seizures. 

He had quite a few and his other medications seemed to just be making it worse. I stomped my feet, got him admitted and they loaded him with Keppra. He obviously has still had seizures since then, but no more Grand Mals. 

 So of course my fear is that this will bring those awful things back. I'm sick with fear. 

It doesn't matter that we will be in the hospital if something happens. They are awful to watch, just awful. They suck so much from Arthur. 

The best way I can describe it is this......

 I watch the Grand Mal monster drain the light from my child's eyes and as quick as he does that, he drains the life out of his body. I loose my son for hours each time. I don't see a lot of sleep in my future

Checked in at " The Big Ship"

Arthur is all checked in at "The Big Ship," ie the hospital. The iPad is already revolting against the WiFi here, so I apologize for the format of my posts the next few days.

 I could start by complaining how long it took them to get a bed for him or that he has to share a room. 

But I know that's just the way it goes sometimes.

 Just not exactly what I expected after looking at the hospitals website. Sheesh! 

He got hooked up to the video EEG and the pediatric residents did their questioning.

 Have to say, they did quite a good job. Really detailed history

.( the nurse side of me can't help but to critique ;) ) 

Based on what those two said the PET scan should be tomorrow at noon. 

Let's hope all goes as planned. 

They also mentioned something I didn't love, but understand. 

 They senior resident said they will monitor him for a couple days and if they don't see what they want, they may slowly wean his Keppra to "see seizures." 

 Are you F@&$ing kidding me?????

 I understand why they would do that. But, as a mother I HATE that idea. We're trying to get rid of this beast not help it rise from the ashes. 

 Arthur and I are just chilling for now.....

occasionally doing JAZZ HANDS in front of the EEG camera :)

Just a vent

I love the current neurologist. She's friendly, pro-active, and I can email her with my concerns.

AND....

She responds very quickly.

You just can't beat that.

The upcoming hospitalization is weighing on my mind, a lot.

I'm so glad that he will get an extensive EEG, MRI and PET scan. Finally we can truly determine where these seizures are coming from. You would think these tests would be automatic when someone is diagnosed.

I saw this statement on a website and I fully agree

Accurate localization of the focus of the seizure activity is critically important to determine treatment options.

I guess what is getting to me is that.... The Neuro mentioned surgery in our last appointment.

The email I got about Arthur's upcoming hospital stay said he was having

a PET scan and MRI because it's part of the pre-surgical work up.

There's that word again

SURGERY

I know surgery can not be forced on us. But it really freaks me out. To me, surgery is the LAST option.

Cutting into my child's head and taking out a piece or two....

is LAST on my list of treatment options

I've read plenty of stories of people who have had success and some who haven't.

I know that once your on AED #3 and up, the chances of the meds controlling the seizures

are pretty slim. I'm fully aware. But, that doesn't make me want to jump right to brain surgery.

UGH

On an even happier note....what if there's something wrong with his brain? 

What if some damage was done

when he was in the hospital as an infant, when he had open heart surgery?

What if there is a tumor in there and that's what has been causing the seizures?

What if?

It makes my heart hurt, makes me sick to my stomach.

Wicked side effects....Zonegran

So I went to pick up Arthur's new med, Zonegran. The pharmacist made a point to talk with me 

and said I MUST read the insert that comes with it.

I think she reminded me five times!

She talked about the decreased sweating and Metabolic Acidosis. Not good!

( The nurse in me is slightly freaking out)

So I get the med and go home....so I could read the darn insert.

ZONEGRAN

The most common side effects: 

• drowsiness
• loss of appetite
• dizziness
• problems with concentration or memory
• trouble with walking and coordination
• agitation or irritability

The most serious side effects? The most important info I should know, that was in BOLD on the insert?

• Serious skin rash that can cause death
• less sweating and increase in body temperature
• suicidal thoughts or actions in some people
• increased level of acid in your blood (metabolic acidosis)
• problems with concentration, attention, memory, thinking, speech, and language
• blood cells changes such as reduced red and white blood cell count

I'M SUPPOSE TO GIVE THIS TO MY CHILD??????????

All medications come with side effects. The side effects they list with Keppra are not pretty.

Keppra causes a lot of the memory, speaking kind of issues already.  

So let's add more problems! Cause the kid doesn't deal with enough.

So the Pops and I decided to hold off on this crazy med. 

Arthur is getting admitted this week for a few days.

To hopefully get something on a continuous EEG and to get a "special" kind of MRI.

Then....we can decide what the best, next course of action is.

To my tough guy

To say I am amazed by my son would be an understatement.

He has been through more in his first 12yrs then most of us go through in a lifetime.

Surgeries, multiple appointments a year. This specialist, that specialist.

Be careful of this, don't do that, where are you....etc etc etc

I don't know if I could handle all that with the grace he does. I don't think I could handle the seizures.

Waking up and not knowing what happened. The fear of when the next one would hit.

Taking all those daily medications and not getting complete relief from the seizures.

To have to live a life that is very structured and deal with parents up in your business

ALL the time ;)

I really don't know where he gets the strength he has. He makes me strive to be a better

person every single day.

I love you so much bud. Saying I'm proud of you will never feel like enough.

You are such an amazingly, cool kid. And I am the luckiest Mom in the world to be able to say

you are my Son

Zonegran....

Saw the Neurologist yesterday. I guess her staff was mistaken, she

wont be out for her maternity leave till mid June. Phew!

We discussed his last two seizures and the return of the

"funny feeling."

Arthur stated it happens at least a couple times a day now

BOO!

Since he was still having seizures and the "funny feeling" is most likely little ones. He must

start a new med.

On top of all he already takes.

Welcome to the family......Zonegran

The Neuro said it was a better choice then Topamax. Since Topamax causes word confusion.

Like, "it's on the tip of my tongue but I can't find the word."

Everything I read said Zonegran can still cause that and has a long list of potential side effects.

Hopefully he will be lucky with Zonegran like he has been with Keppra.

The big side effect the Doc mentioned?

Decreased sweating

Ummmm ok?

Guess he will have to drink more water. But with his history of

having seizures when he's really over heated....you would

think this drug would be a bad choice.

I don't know?

At the appointment it was also decided he will be admitted soon.

For at least 1-3days to hopefully catch a seizure on EEG 

and most likely an MRI.

From his last sleep deprived EEG she thinks the seizures may come from some where 

deeper in the brain....hence the MRI.

Exactly how everyone wants to spend a 3 day get away, right?

So tonight Mr. Zonegran enters the family.

The Doc said it should help Arthur sleep...... I hope cause Mr. Keppra

can be quite the jerk about sleep.

“First the doctor told me the good news: I was going to have a disease named after me.” - Steve Martin.