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.