Karlie

OK, first of all, this is my first post. So if I'm not good......give me time, I shall get it....

Since Wednesday, Karlie's seizures seem to be getting worse. We just can't seem to get them under control. They are just awful. Wednesday night she walked around like she was drunk, and she was choking on food. She also has been having trouble controlling her left hand. Like to pick up anything with it, she is just having trouble.

So, we called the Dr at OU Med Center in OKC and told her that Karlie's latest upage of pills was not working. She said that she wanted to refer us to Cook Children's Hospital in Fort Worth. She wanted them to evaluate her and do a Video EEG. They told us it would take about 5 days. (at this point, whatever it takes to get rid of my baby's seizures. I just can't stand to see them.) So I called back this week to let them know that she is getting worse. But guess what, her Dr is on vacation for 2 weeks. So, knowing that I didn't want to wait that long, I called to Cook Children's and started searching for the Dr that Karlie's records were given to. I left a message, and waited for them to call me back. This was Wednesday afternoon. I called back again on Thursday. They told us that we could get in on September 8th. (wow....that is a long time to wait.) But she assured me that was the soonest they could get her in.
Well Thursday afternoon, our friend Larissa that was watching the kids called to tell me that Karlie had a seizure right after she got up from her nap, went to the bathroom, and then came into the living room and had another seizure and lost control of her bowels. Well I called the on call Dr at OU and she not only wasn't very helpful, but she suggested that we come down to the ER at OU Med and see the on call Neurologist. So I panicked and called everyone I could think of...anyway, we headed to OKC (at about 80, because that is how I drive)
Well, we sat there for 6 hours waiting on the Neurologist to get there. Karlie was so good. She colored, played with a balloon, and played games on the laptop. She ate a peanut butter and Jelly sandwich and some cookies, and some turkey, and a popsicle. And didn't have very many seizures at all.
Well, the ER doc came in and said that as long as she was at her base line (basically what is normal for her) then there really wasn't anything they could do. He questioned us about the seizures she is having. When he asked how many she has in a day, we told her it was too many to count. He wanted a number, so we told him it was somewhere in the neighborhood of about 16 in a 30 minute period. He said all day, and we told him no, 30 minutes. And it is like that all day long. They just don't believe us on how many. Anyway, the new Dr said that we just needed to get a video EEG and to just wait until we could do that. It kind of seemed like he felt that our current Dr was treating the wrong kind of seizures.

So, at midnight-30 we headed back to Enid. Karlie had stayed awake and been a very good kid all night long. We made it back to Enid at 230 in the morning.....long day!!!!! So I stayed home with her today and she was just a normal kid. She played and fought with her brother, didn't have too many seizures and was more alert and just killed me. So we are waiting for September. Wow, August is going to be long.

OK, so there it is. My first post. Probably a little wordy, but hopefully I will get less windy as I learn how to do this.