Frustrated

Hi all. Just an update. We were in ER with Hannah again last night. David and I were in the livingroom hanging with Zach when I heard a strange noise on the baby monitor and sure enough Hannah was having a seizure. I had to give diastat to stop it and then we made a trip to ER because Cook's neuro's told us not to mess around. If she was having a seizure that I had to use diastat to stop, having clusters, or going into status to take her to the nearest ER. Two status seizures in less than 3 months is serious, and they feel like the ER can hopefully stop the seizures and keep status at bay if we get there in time. Thankfully the diastat seemed to work this time and she didn't have more seizures when we got her there. They gave her a dose of klonipin and sent us home. Because she hadn't been sick, wasn't running any fever and the only thing that had happened that day was she got a flu shot they didn't poke and prod her. For that we were thankful. She still has bruises and cuts all over her arms from her Cook's ordeal.

We got to ER and David took Hannah back while I filled out all the neccessary paperwork for the 100th time. In the mean time the triage nurse comes out all in a huff and says, "Chapman, where is Chapman?" Then she looks at me all hateful and says, "HANNAH, where is she?" I told her she'd already been taken back. She then sighed real heavy and said, "how much does she weigh? Do you know?" I told her and she turned with her little attitude. Then as she was walking away I said, "Good God! What is your problem?" She met me in a few minutes outside the door and patted my shoulder and said, "I'm sorry" I go in with Hannah and she is sleeping off the diastat pretty soundly. The ER doctor comes in about an hour later and starts asking questions. Then he tells me there is not really anything he can do. Can you give me a number so I can call the neuro he said. I gave them the number. I explained why we were there. He explained that he didn't mean to sound heartless but really if she wasn't seizing when we come in there is nothing they can do. DUH! I brought her there to have her vitals checked because I gave her diastat and the seizure lasted too long that she had. I can't predict whether she's going to go stauts or not! I was doing what the neuro's told me to do. Do they think I enjoy giving them $200 everytime I come there? UGGGGGH! So, he called the neuro. They asked about her vitals and then told them to give her klonipin and for me to continue giving it to her through the weekend. We did all that last time and she still went status a few hours after I did it. Thankfully this time it all seems to have worked and she didn't have anymore last night.

I'm soooooooooo frustrated with this situation. Basically they are saying we are doing all we can be doing. However, I can't accept that. We had complete seizure control for 2 1/2 years on topomax. At this point I'm ready to put her back on it to see if it'll work again. The only reason we took her off of it was becasue she had gone seizure free for 2 years and we chose it to get rid of because we thought she was having cognitive side effects. And her world did open up when she came off of it. It's a catch 22 I'm afraid. We either have seizures, life threatening seizures or we have a zombie. It pretty much stinks. Many people that have kids with Dravet syndrome think Hannah has it. When I mention it to the neuro's and doctors they look at me like I'm from Mars. Apparently there is only a handful of neuro's that can diagnose it or even know about it and they are in places like Chicago, ,etc. We see our neuro on the 23rd and I'm taking him the information I've gathered on it. Not that it'll matter really. We then have an epileptologist appointment in April of '09. Earliest available date. We see a geneticist on the 27th of this month as well.

I'm sorry this is not one of my positive moments. I"m just really frustrated, tired and scared. Please keep praying for Hannah and hope they can find some answers soon. Seizures we can handle even, but status we cannot. Well, we can, but it is really hard.