No seizures for almost a month!

We're crossing our fingers and praying more than ever! Mariah hasn't had a seizure since January 1! The only thing she has changed is that she takes one of her meds only once a day instead of twice. She was taking one Vimpat in the morning and one at night. Also, she takes Kepra at night. She stopped taking the Vimpat in the morning and hasn't had a seizure since. We are hoping that did the trick. We still haven't heard anything about going to Charleston from Dr. Pusey yet, but are hopeful that it will be soon. In the mean time, we are still just taking one day at a time and reveling in the no seizure time!

Crossing fingers..... Mariah hasn't had a seizure in one week! She was having the leg spasms the other night, but no other seizures. Praying and crossing fingers that this new med is the answer!

On Monday, August 23, 2010, Mariah went to the highschool to help Mrs. Ray after school and to just hang out. I was on my way to pick her up when Mrs. Ray called me about 5:10 and said that she had gone out of the room and when she came back, Mariah was having a seizure and that it had already lasted several minutes. I got there at around 5:20 and she was still seizing. She was lying on her stomach in the middle of the isle, but it did not look like she had hit a desk when she fell, but possible the floor. I counted atleast 5 seperate seizures and Mrs. Ray said that she had probably 3 or 4 before I got there. At around 5:45, she finally came to enough for us to get here to sit up. She kept saying that her neck and head hurt really bad. We were finally able to leave the school at around 6:20. When we got home she still complained of her neck hurting and had a really bad headache. She tried to eat, but said she felt nauseated and dizzy. The headache got worse and she could barely talk. I decided to take her to Urgent Care. We got there at 8:00 and did not get taken back to be examined until 10:00. They started an IV and gave her morphine and adoral for the pain. The doctor finally came in around 10:45 and said that they wanted to do a CT scan but their radiology dept closed at 10:00 so we would have to go to the main hospital ER. They decided it would be best to go by ambulance, but we had to wait because they just left to take another patient and would be back in about 30 minutes. While we were waiting, she had 2 more seizures so they added 2 more units of adoral. She slept most of this time. The ambulance got there at 12:45 and we arrived at the ER at 1:15. The nurses at the ER changed her into a hospital gown and they all worked very quickly and efficiently to get her settled in. I did notice that one of the nurses was kind of rude and spoke rather loudly and the other was very sweet and smiled and talked very gently. This was the beginning of the crappiest visit ever! We waited and waited and waited. They started a second IV of nothing but regular old IV stuff, whatever that is. The doctor finally came in at around 2:30ish and said that they would get the CT scan done soon. They came in and got her at 3:00 and she was back at 3:15. I can't remember what time it was, but at some point one of the nurses came in and catherized her to get a urine sample. At 4:00, the rude nurse came in and said that Mariah needed to sit up and walk. We got her to sit up and I tied her gown in the back and put her snuggy on her like a jacket. The nurse told me to make sure she sat up and that she would be back in a minute. Twenty minutes later, I went out and asked her what was going on and she said we needed to get her to walk around the nurse's station so they could send her home. I was more than pissed. They pump her full of drugs to make her sleep and then want her to walk around. So we start walking and no sooner did we walk a little more than 15 feet out of her room, the doctor said that was enough, that she could go back to the room. All that fuss and rudeness for nothing. Mariah needed to go to the bathroom at this point but could not walk that far, so they brought in a porta potty. At 5:15 the nice nurse came in to finalize the discharge paperwork. She was so sweet, too bad we didn't have her the whole time. We left the hospital at 5:30, stopped at McDonald's for some breakfast and got home at 6:00. I got Mariah in the bed, she ate her pancakes and fell asleep. I called into work to let them know that I had to stay home with her. She slept for most of the day. Later in the evening, she woke up and said she was hungry. I fixed her something to eat and we started talking, but she didn't remember any of it. She kept saying she wanted her daddy. I tried calling him, but he didn't answer his phone. Mariah was really confused and thought that John and Tammy were still together living in Elgin. She did not remember that he lived in West Virginia and that Tammy was remarried and living in Clemson. I was really worried, but Mom reminded me that she was still under the influence of all the meds they gave her. Wednesday morning, I took her up to Mom and Dad's so Dad could keep an eye on her. When we got there, she thought that Tater (Mom and Dad's puppy) was our dog Milo (Tater's daddy). She still somewhat confused and acted really child like. I got her in bed and told her to rest. I came home at lunch and she was sitting up in bed and asked why was she there. She could finally tell me her birthdate without hesitation and knew that her Dad lived in West Virginia. She was still really tired but was better. I made her stay in bed until I got home from work. We came home after work and she ate dinner, played on the computer a little and went to bed. Thursday morning, I went to work and came home again at lunch. She was still asleep. At 3:10 I called Daddy and told him not to let Dakota go to the house and he said that he already went down there because Mariah said that it was ok. I called the house and Dakota answered the phone. At first he said Mariah was doing laundry but then said that she fell and was having a seizure. I called Daddy and asked him to go stay with her until I got home. I left work at 3:17 and was home at 3:25. She was not seizing, but was still unconcious. I finally got her to come out of it at around 3:45. I got her to the couch and then a little while she went to bed and slept all night.

A little note to add: on August 19, we went to see Dr. Pusey and he changed her meds. He added Vimpat and took away Zonagran. She was to take the sample of Vimpat for 1 week and stay on Zonagran that first week and then drop Zonagran. So at this time she is on Kepra XR and Vimpat.

We went to Dr. Pusey today about the twitching in Mariah's left leg and he says that it it focal seizures. I was very surprised about that but he said that not all seizures involve losing consciousness like what we have seen with Mariah's seizures so far. He said that it depends on what part of the brain the seizure is in, that's why they call them focal seizures. They are focalized in one part of the brain that controls what the seizure affects. He added a new medication called Vimpat and after 7 days of being on it, she is going to stop taking the Zonagran. Right now she is on Kepra XR and Zonagran. She will start the new meds tomorrow morning, taking one in the am and one in the evening. I am really crossing my fingers and hoping that this medicine helps and stops the seizures all together.

In the meantime, I am still working on trying to get insurance, but it is slow going. Why does this have to be so difficult? I feel like I hit a brick wall everywhere I turn. After we get the insurance in place, we will finally get to go to MUSC in Charleston to have tests run to see if there is anything they can do to get rid of the seizures once and for all. I know that involves some type of surgery, but I hate seeing her in so much pain all the time.

Last night Mariah had another leg twitching episode in her left leg. I am almost positive that it is her sciatic nerve. When I pressed on that area, she said that it relieved the pain. She went and got a tennis ball from my Mom, so I hope she uses it to do those exercises to help reduce those episodes.

We are still waiting on insurance. I am trying to apply for the plan through the government, but am waiting on the denial from "regular" insurance in order to send the application in. Lord knows when it will be all complete. I don't how much more she can take of this waiting and feeling in limbo. I just want it to all be over with. I want nothing more than for them to be able to find a way to get rid of the seizures all together, but it will involve major surgery and I am scared for Mariah to go through that. But, I think that it will be better than having to endure all of the seizures and the after effects. Just crossing our fingers and praying really hard!!!

Sunday, August 8, I took Mariah to The Old Mill to do a photo shoot. Her friend Ariel met her there and after the photo shoot, she called me and said that Arial would bring her home. When they got home, she asked me if she could spend the night with Arial in North Augusta. Mariah seemed in a pretty cheerful mood to be getting out of the house and spending time with a friend. I talked to her on Monday and she said that she had a seizure Sunday night but that Ariel was with her when it happened and that she was ok. She spent Monday night at Ariel's as well. When she got home on Tuesday, she was very tired and went to lay down in my bed pretty early. At 11:00 pm, I went to bed and heard Mariah whimpering. She said that her leg was twitching. Her left leg was twitching like when she is seizing. I rubbed her leg with lotion and had her press her foot against my hands as hard as she could. She said that it helped and the twitching finally stopped. She had another episode with the right leg twitching on Wednesday (August 11) evening. I did the same thing, rubbed her leg and had her press down on my hands as hard as she could. I am not sure what is causing this twitching in her legs.

Mariah had a seizure on Thursday, August 5 at approx. 5:45 pm. I had gotten home from work and she wanted to go to Target to get some baby blocks as a photography prop for a weekend photo shoot. I really did not want to go anywhere after working all day so I asked her if we could please go Friday night instead. She was disappointed, but agreed. I started to make supper and she was standing in the kitchen with me and I was talking to her, but she did not answer me. I looked over and she had a blank stare on her face. I asked her if she heard me and she sorta snapped out of her daze and said she didn't feel good. I walked out of the kitchen toward my bedroom and then went into the bathroom. Dakota yelled out that Mariah was having a seizure. When I got into the living room, she was face down, seizing. She kept hitting her head on the floor and I could not move her, so I put my hand under her forehead so she at least would not be hitting her head so hard. She finally stopped seizing and I got her turned over to her side, but started seizing again. It lasted approximately 10 minutes, but I think that it was a series of seizures, not just the one or two. When she finally opened her eyes, she did not know who I was and she was even terrified of our dog, Milo. It took me about 15 minutes to get her to get up off the floor and I put her in my bed. She still did not know who I was. I kept checking on her every few minutes for about 30 minutes. Around 6:30 she called out to me and asked me why was she in my bed. She got out of bed and went to sit on the couch. She complained the rest of the night about a severe head ache. She did take her meds and a muscle relaxer around 7:00, which is the normal time to take her meds.