Another seizure...

STUPID ALPERS!!! I wish I could beat it up!

On Monday at 3:00 am I woke up to Averie having a seizure. She was sleeping with me in bed and it sounded like she was really congested or something. In my sleepy daze I tried to get her to cough up the gunk, but then I felt by her mouth and all I got was handful of wet stuff. I thought "bloody nose!" and turned on the light...that's when it was very clear that it wasn't blood, but saliva bubbling out of her mouth. I tried waking her with no response. I jumped up and yelled for my mom to call 911 because it was clear Averie was having a seizure ( it took a minute to get them to realize what was going on and I almost broke the phone trying to get it to dial...i was shaking SOOOO badly! ). I immediately got the rescue diastat and while my mom was on with  the dispatcher I gave Averie her first dose. Dad helped me get her downstairs to the couch where we watched her carefully. The seizure was tapering of ever so slightly so I gave her the 2nd dose of diastat. Almost instantly her body relaxed and she appeared to just be sleeping. Minutes later the EMTs were there and taking vitals. They said everything looked alright, but I warned them that most likely she would start to seize again. The decision was made to take her straight to Emanuel Hospital. I rode in the ambulance with her and at one point the EMT asked me to describe what seizure activity looks like. It ended up that she may have had a little seizure in the ambulance, but apparently it stopped on its own. He had me move to the back to sit by her so that I could point out any other seizure activity, but the whole rest of the trip she remained seizure free. When we got to the ER they got an IV going and gave her some meds to keep her tummy calm. She still hadn't had another seizure so after about an hour in ER we were moved up the pediatric unit. Averie slept most of the morning and only woke for little drinks now and then. Finally in the early afternoon she woke up more fully and proceeded to eat a chocolate chip cookie, a whole dish of mac n' cheese and drank a ton of chocolate milk. After talking with the neurologist and watching her closely they said that we would be able to go home! It was the general consensus that her daily meds needed to be increased , but that she was almost near where she needed to be since she only had the one seizure and  that it was easily stopped with the diastat. This is very similar to 2008 after she was first diagnosed, when it took several medicine adjustments to get her seizures under control.

Hopefully with these adjustments we can look forward to another year or two without seizures. Most likely we will be having to make adjustments all along the way as she continues to grow taller and gain weight. I will happily deal with this if we can keep her at her baseline. I just really hope she will not have any more seizures during the night. I am seriously considering setting up a video monitor in her room to watch for activity. If I don't do something I might never sleep well again!

Big Scare!

Well as some of you already know Averie had another seizure last week. It was completely out of the blue and totally unexpected. I was over in Idaho preparing for our move and Averie had stayed with my mom so she could do a review week of school. Bright and early in the morning I got a call from my sister saying Averie was in the midst of a seizure. Intially I felt completely helpless because I wasn't there, but I also knew my mom would know exactly what to do. She had immiedately called the amulance and after confermation from me she administered a rescue seizure med- a diastat of rectal Valium. It worked almost instantly and just as the paramedics arrived. Her heart rate and breathing remained good, but another dose of the valium was administered just before the parmedicas left. En route she was was given IV fluids ( pretty gross, but they drilled into her shin bone and put the fluids right into her bone marrow ) as instructed by her emergency form. She made it all the way to the hospital where she then vomited and started to seize again. The doctors chose to give her Ativan and intubate her when her CO2 levels got higher than normal. After a couple hours she was transported in to Emanuel Hospital in Portland, OR.
The doctors told us it would probably take several days for her to wake up from all the meds she was given. She had recieved enough Ativan to knock out a football player for a day. To my surprise when I got to the hospital that night she had already been extubated and was waking up! She is so incredibly strong! Although it seems the seizures are the easy part because from from the time she woke up at 12 am she ended up staying awake untill 3 pm the that day. She also seemed to have double vision and even though she wanted to be up moving around her body was like a limp noodle and wouldn't cooperate. Add in her IV and all the wires for her heart monitors she was a very cranky and agitated little girl. Every so oftern she would yell, " NURSE!! NURSE!!" fully expecting them to come running. If they did happen to come in she would say, "What are you going to do to me now?" I really couldn't help but laugh even though I was extermely exhausted myself.
The next days proved to be better, as each day she became stronger and more coordinated. She was able to walk to the bathroom with a steady hand to guide her and lots of patience. The doctors were very impressed with how well she was doing and allowed us to finish her recovery at home. They know I am confident in caring for Averie after a seizure of this size.
I am so happy she is doing well, but the big question is Why Did She Have A Seizure? She hasn't had this sort of seizure since 2008! Normally there would have been warning signs like a headache or vomiting. Neither of these happened. She was just sitting in a chair reading when she became frozen and unresponsive. This scares me more than the ones where she shows signs because it means this can happen anywhere and anytime, including school. Its definitely adds another level of worry to the whole enrolling her in school situation thats for sure! I really think this seizure happened because she needed an increase in meds , but you never know. I need to schedule a follow up EEG to really know what is going on. I pray the higher dose of meds will do their job and Averie can continue to live a "normal" life. So the process to enroll her in school starts tomorrow..and I pray that I will be strong enough to put my faith in other people to care for her for a couple hourse a day.