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30 March 2013

Cassie's hospital experience

While we still don't know a ton, we know enough that I'm sharing what we do know now. We were at valley medical center with Cassie in the emergency room from 6pm-midnight on Wednesday then the Pediatrics ward until earlier today, Friday, when we were finally released to go home because she is having seizures. Not a great reason to be there.

Leslie and I were discussing that we thought she had a cold a few days ago because he had a cold and i had a sore throat. Later that night she was sleeping on my chest and started sucking in air strangely and jerking her whole body in towards the core. It was periodically pulling in towards her center in a pattern similar to hiccups. I thought it was that she couldn't breathe because her noise was plugged and she wasn't breathing in through her mouth so i tried to open her mouth and get her attention and then it just stopped. I didn't think much of it. But then it happened again later and i said something to Leslie and he said that she'd done it while he was holding her too. He didn't seem too concerned but I knew it was something I'd never seen before and that made me nervous.

I tried to google it and found normal infant jerky limb movements due to their still developing nervous systems, and seizures. Welcome to the age of "cyberchondria", you know? So Leslie basically said he want worried about it but that if i was worried about it to call the Dr. So i did and initially they told us to come in to the Dr office at 5pm then called back and said the nurse wanted to talk to us. The nurse got a description from us and went to talk to the Dr and the Dr said to go into the er because they could run tests and do scans that they couldn't do at the pediatricians office. So we went to the er.

They checked her blood oxygen, blood sugar, did a ct scan (came back normal), took blood and urine for testing, and finally sent us to a room up in Pediatrics. During the time we were in the er she had 4 episodes of what we now know were her having seizures. The final time it was finally seen by someone other than just myself or Leslie, one of the er doctors.

So after we went to the room they told us we were waiting for the neurologists to come in the morning so we tried to get some sleep, myself about 3-4 hours, I'm thinking Leslie got about 5 so not much more. When the neurologists came in they asked us for some information and said that since it wasn't really obvious what was going on that they were putting in an order for a 24 hour EEG (brain wave/activity monitors) and said that they might know something later today, if not then definitely tomorrow.

So they set her up on the EEG and i think we flagged about 3 or so episodes when the neurologist came in and said it's definitely seizures. He said they were going to start her on iv medications to try to control them and were still waiting on the test results.

So they gave her keppra by iv at about 4pm then more orally at around 3am and it seemed like things were finally changing. We hadn't seen her have any seizures for quite some time.

The Dr came in to talk with us the next morning. The Dr said the neurologist had said it isn't infantile spasms which is what a lot of people online on the forum I'm part of were trying to say it sounded like, because it lacks the specific markers for that on the eeg scan. He called it "focal motor seizures" and said it meant it comes from a specific part of the brain and the motor part was the movements. The neurologist had pointed to an area at the to middle of his head when he was in telling us that they were for sure seizures yesterday, and this Dr indicated the same area on his head.

They don't have a cause yet still and we're still waiting for the metabolic or something of the like test results. He said the neurologist would be in later, most likely after the 24 hours was passed on the eeg, to discuss things in more detail, and that they would do their best to keep us updated as soon as they knew anything.

Later on the neurologist came in and told us similar information to what the Dr had said. That it was focal motor seizures. That the medication seemed to be working. That she hadn't had any seizures since 7pm the night before. They says that they might be sending us home that day depending on the pediatric team's thoughts.

They disconnected her from the EEG around noon and a new Dr came in and was observing her and she had 2 seizures in front of this Dr. This caused them to go off and debate whether they were going to let us go today or if they wanted to keep her longer, overnight for more observation.

Ultimately they decided that keeping her wasn't going to change much so they released her with a prescription to be picked up and orders to make an outpatient appointment with another neurologist and with her pediatrician in 5 days. They said that they are waiting for test results that won't come back until Sunday at the earliest.

So this is where I get confused a bit. After we got home she was sill having seizures so we called and they said to give her the 0.5 ml dose of keppra 6 hours early and then in 12 hours to up her dose to 0.7 ml since she was still having seizures. They knew she was still having them prior to her last dose at 3pm at the hospital before we were released to go so why didn't they up the dose then?

She is still having seizures even after the early extra dose and that worries me. We're kinda talking about possibly calling or going in to children's or Swedish. They want to send her in for an mri at one of those places anyway and something is better than sitting here doing nothing but waiting.

Everyone keeps asking how we're doing. How we're feeling. How we're holding up. If they can do anything to help.

I feel like I'm mom who can't be mom and kiss it and make it feel better. I feel like I'm useless and helpless to do anything to make it better. I feel like crap. I'm tired. I'm upset. I'm frustrated. I'm... Here... And as for doing anything to help, i don't even know what to say on that one.

It's just.... That's it.... That's where we are at. That's all we know.

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