Wednesday, August 17, 2011

Isabel's First Set of Seizures

March 2011
Last Saturday (the 19th) started off as any normal weekend day. The kids slept in then we went and got some pictures taken at JCPennys (mistake #1). We got home around 10:30 and put Isabel down for a nap. After she woke up I took her and Caden grocery shopping. I gave the kids some free samples of Swiss cheese and headed over to the bread aisle while talking to Caden about which "toast" he wanted for the week. I then looked back at Isabel who was slumped over the front of the grocery cart, lips blue and unresponsive. I grabbed her and immediately thought that she must be choking. I started whaling on her back to no avail. I shook her and screamed her name...thankfully she came to in about 30-40 seconds. She looked at me, smiled then fell asleep on my shoulder. We left the grocery store and quickly headed back home. She was alert on the way home and seemed to acting like herself. When we got to the house, I took her out of her carseat, stood her up on the grass and she immediately fell to the ground like a wet noodle. I picked her up and again she fell right to sleep, she was fighting so hard to keep her eyes open. At this point I knew something was very wrong. I put her right back in the car seat and we headed to the closest ER.
When we got there, again she was acting normal but I was a mess. They took us right back and a nursing student was doing her vitals when it happened again. She started staring off, her head started to bob, her lips turned blue and she fell asleep. At this point they started to take me very seriously and took us right to CT. They tried twice to get a decent CT scan but she was crying so hard that the picture just wasn't clear enough. She then went on to have yet another seizure in the CT room. They decided to transfer us to the Childrens Hospital by ambulance since there was nothing more that they could do for us there. They started an IV in her left hand (she ONLY sucks her left thumb so she was not happy) and gave her some anti seizure medicine. While we were waiting for the ambulance, she had another seizure.
They strapped her in her car seat to the stretcher complete with an oxygen mask and blood pressure cuff. The ride was very short but it seemed to take forever. She was so upset that she couldn't comfort herself  with her thumb and she also couldn't eat due to the tests they had to run at CHKD.
When we arrived at the Childrens Hospital we were brought into the room right next to the nurses station and Isabel was added to the patient board on top in red...which is huge for all of you who know CHKD. She proceeded to have three more seizures while we were in the ER. Each time she had a seizure her oxygen level would drop into the 60's and all of the alarms would go off. We met with countless nurses, residents and doctors. Finally we learned that we were going to be admitted and that they wanted to run another CT scan to get a better picture of her brain. By this point they had started her on a second anti seizure medicine called Keppra. Thankfully she slept soundly through the CT and it came back clear. Around midnight we were admitted and brought to our room.
She slept for about an hour then woke up screaming bloody murder. She screamed like I have never heard a child scream before. After about an hour we had to call the nurses in. It took four of them to hold her down and somehow she had managed to rip her IV out. They said that her behavior is a side effect of the first seizure medicine since they had to give her such a large amount. The nurses took Isabel to the treatment room and tried twice to start a new IV in her right hand but it blew both times. They finally called a PICU nurse who was successful. They brought her back to the room around 3am and she slept fairly well after that.

The next few days were spent waiting for tests to be run. The EEG was done on Monday and that was fairly normal except when they flashed the lights in her eyes. Her readings went up more than they should...not enough to say that she has epilepsy, but we can't rule it out. She then got a EKG on her heart which was just fine. While we were doing the EKG the lights were off in the room but the TV was on, right in front of her. While we were on the elevator coming back to her room after the procedure we think she may have had another small seizure. Her lips did not turn blue but she was unresponsive. The last and final test was the MRI. We had that done on Tuesday and thankfully it was clear for the most part. They did find a pineal cyst/tumor on her brain but they don't think that is what is causing the seizures but it is something that we are going to have to keep an eye on. Her neurologist set up another EEG for April 6th and we have a follow up with him every two months. She was sent home on anti seizure meds twice a day until further notice.

The meds seems to be working but I feel like I have lost a little piece of my Izzy. She no longer gets as excited about things, she just doesn't seem as happy. It's almost as if she is She has also been starting to get "tics". She clicks her tongue and jerks her jaw and head foward. I'm scared of whats to come. I know things could be a lot worse and I am thankful that the diagnosis is JUST seizures. I'm just nervous for my little girl, so very nervous.

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