Moving Forward

Today Peyton had an appointment with Dr. Kerr to get a second opinion about all that has been going on with her. I have been so nervous for this appointment. Nervous that once again Peyton would be written off and completely ignored by another specialist. This appointment could not have gone any better. Dr. Kerr was kind, concerned, and proactive. Just what we need. Someone to look outside the box and get to the bottom off all these problems. She came up with a game plan. Peyton will do a sleep study with an EEG at Primary Children's. This will help us get to the root of her issues at night. She will be changing Peyton's medication. She feels this will help with Peyton's low weight issue as well as decreased appetite. She will also go to Shriners Hospital to have her legs evaluated by an orthopedic specialist and also have a swallow study done. I know this seems like a lot of testing but it is about time someone stepped up to help us get to the root of her problems. So no answers, but there is a game plan. HALLELUJAH!

Vexed

I was going to update this yesterday but decided I had better not. It just would been a list of profanities. I called to check on the test results for Peyton. The nurse called me back and said she spoke with the neurologist and  her EEG was abnormal but they didn't see any seizures... Um excuse me what? ( Adam and I clearly saw at least 5 while she was sleeping over the three days and her previous sleep deprived EEG showed it was abnormal with episodes and where it was coming from ugh). So I said that doesn't make any sense to me. She is still having problems at night so what am I supposed to do? I was told to talk to her pediatrician. At this point I was irate. Are you freaking kidding me. It feels like because she doesn't fit into anybody's box of diagnosing no one is willing to take the time to help Peyton.( Thank heavens for her pediatrician who is amazing). I called her pediatrician who had us make an appointment for today. I told her the situation and what I was told. She and I agreed that there needs to be a second opinion. I was able to get her an appointment with an amazing neurologist in December. I am pretty frustrated at this point but also understand that it's part of the game. I am not going to be saying any specialists names unless someone asks me directly. I don't feel that they are necessarily doing a bad job I just feel like no one is willing to invest the time to help us get it figured out. So it's not the awesome Yay we got answers update I had hoped for but it's an update.

Here It Goes...

I honestly don't even know where to begin with this blog about this sweet girl. So I will start at the beginning.

Here is a picture of Peyton and I on March 1, 2013. She had just had her 6 month shots. (She had been sick so she was actually almost 7 months old). The next day on March 2nd she had her very first seizure. We had been at the mall all day and when I came home sat her on the floor to play. I went down stairs and when I came up, I saw my sweet girl having a seizure. After what seemed like forever but was probably only a minute or two, she stopped breathing and turned blue. I will never forget scooping her up screaming for Adam and meeting him halfway down the stairs and saying "she's not breathing". After handing her to him I ran to call an ambulance. I now know why they teach you in grade school what to do when you call 911. I just kept saying she's not breathing and giving our address over and over. By the time the ambulance came she was breathing again. They took her and I in the ambulance to the hospital. She was scheduled her first EEG a few days later. We meet with a neurologist who said that her EEG was normal and she likely had a reaction to the immunizations. She said that it wasn't likely that Peyton would have anymore seizures. I remember leaving that appointment feeling relieved but also feeling like this wasn't the end either. After that appointment it stared once a week Peyton would be playing and then all of a sudden she would just fall over and be like a rag doll and have a zoned look. Then it started happening more and more frequent. Her pediatrician wanted to be sure it wasn't her heart.

Once we got the results that everything was good with her heart it was back to Primary Childrens to meet with another neurologist. By the time her appointment came around she was having those small types of seizures a few times a day. We met with the neurologist I showed him the log of every time I saw peyton have a seizure. What she was doing, where she was ect. He decided that she needed to be admitted for a 3 day EEG at the hospital. 

  After those 3 days they were able to catch a seizure on the EEG. She was diagnosed with epilepsy. They said that is comes from the back left side. She has partial seizures. We were told that it is something that she may grow out of, kids do it all the time.  They put her on the medication Keppra. Other than having to up the dose every now and then she had done pretty well on it up until the past little while. She has begun having seizures at night. I knew that she was having problem sleeping so I mentioned it to her neurologist at an appointment. He was immediately concerned and ordered an EEG. When the EEG came back abnormal which we expected he then ordered a 3 day EEG at home with video.

Getting them on her this time was pure hell. When they do it at home they use this glue. To get the glue to dry quick a cold air compressor thing is used. She was screaming and crying. I was crying, her poor baby brother was crying (Thank you Courtney for coming to the rescue). Once it was on she did well keeping it on and loved her "backpack". I knew that she was likely having seizures at night but I didn't know that they were so frequent and pretty bad. She has also started have a different type during the day that are very subtle and quick. So now we are just waiting for the results. We should get them on monday. 

It kills me to have to watch this little girl go though all the things she does and she is only 2 years old. She is the sweetest little firecracker around. I started this blog to be an outlet and share her story, her everyday battle. To hopefully let other parents out there know that you are not alone, you don't have to do this alone. Epilepsy sucks and that is all there is to it.