February 2011 Nightmare

 November 2010 through May 2011 were probably the hardest months of my life, for more reasons than I ever plan on explaining. We were introduced to some trials, some long-term, some short-term. We relied a lot on the Lord and I think Brandon and I relied a lot on each other. I am grateful for the things that I know that help me weather these storms in our life.

One of our curve-balls: Brandon had been noticing that Kyla would blank out for moments every once in a while. When he told me about it, I thought he was crazy. I was with her EVERY day, how could I not notice if something was going on with Kyla?? Then one Sunday in March, I heard a "thunk, thunk" - Kyla had been crawling around on our bed - very common for our little monkey - and had fallen. I thought she had just slipped so I ran over to pick her up and see if she was OK. What I found was Kyla with her eyes rolled back, making no response when I talked to her. Kyla was having a seizure. It was really fast, maybe 5 seconds long after I picked her up. I was scared to death, but I was also in denial. I thought maybe it was a fluke and she had just blanked out because she had fallen. But I continued to watch her very closely. Two days later, it happened again. I started calling neurologists. I just wanted someone to tell me what was going on with my baby. Unfortunately, her pediatrician could not help us because he had no experience with neurological problems, he suggested we see a neurologist. The neurology nurses would not talk to me because we were not technically a patient yet, but at the same time, they could not get me in to see a neurologist for over a month. I wanted answers. But no one could give them to me. We were scared. But at the same time, every person I talked to did not seem to think she needed immediate help or the emergency room, so I took that as a good sign. However, I was NOT going to wait a whole month while she was having seizures almost every day. 5 days later we took her in to get an EEG. Basically a brain scan, to monitor her brain waves. I had to get her up really early, not let her eat or drink, and make sure she did not fall asleep. She had about 7 seizures that morning. I did pretty good at keeping her awake until we had to drive a half hour to Primary Children's Hospital and, of course, she fell asleep in the car. No amount of singing, windows open, or talking could keep her awake.These pictures show Kyla all hooked up to the wires for her EEG test.

 Kyla did not have any seizures during the test. I was disappointed because I thought this meant that we would not get any answers. My pediatrician got us an appointment with a different neurology group out in Dallas. It was only one week away. We took it. When we showed up for our first appointment, the doctor told us that Kyla's EEG test did indeed show abnormal brain activity. He indicated that she was having abnormal brain waves originating from the left hemisphere of her brain. They were culminating in complex partial seizures. Now we had to find out WHY.

We scheduled an MRI for a week later. Watching my baby undergo so many tests was heartbreaking. She did not go willingly. Many times I had to hold her down. Brandon had to work so I had to do much of the testing on my own. 

Our next appointment with the neurologist gave us answers, but not as many as I would have liked. I was kind of hoping the MRI would not show anything. I was hoping Kyla had a form of child epilepsy, the kind children grow out of most of the time. What the MRI showed, though, was a brain malformation. It is called Cortical Dysplasia. She was born with it. She had always had it. The seizures had just chosen to manifest at 3 1/2 years of age. I was terribly relieved to find out that it was not a brain tumor causing the problems. We realized though, that a brain malformation will never go away. I often get asked if Kyla will grow out of her seizures and the answer is NO. She will always have the brain malformation and will, as a result, always have seizures. Unless they can get the seizures under control through medication.

The result: we put her on an anti-seizure drug called Keppra. It worked! She stopped having seizures for about 4 1/2 months. Then, in the middle of August, those darn seizures started sneaking back into our life. Just one here or one there. We started going back to the doctor and, having moved to Utah, were referred to a new neurologist in Salt Lake City. Our first visit to the new doctor was heartbreaking for me. He was much more forthcoming with information than our doctor in Texas had been. Our doctor in Texas did not really tell us stats or what to expect. Cortical Dyplasia affects everyone so differently, that he did not really want to give us any sort of "This is the way it will be" lectures. I knew that it could cause mental retardation, I also knew it could cause learning disabilities. But it didn't always cause those things and Kyla seemed to be developing fine. So I had hopes that Kyla would not fall into that category. Our doctor in Utah gave us more information. The picture seemed much more grim. When Kyla would have a seizure, I would just hold her and cry. Kyla's doctor told us the odds of completely treating her seizures with medication are not very good. Medicine rarely works forever. Most people have seizures despite medication. VERY few people with cortical dysplasia ever stop having seizures completely. That is VERY rare. There is a brain surgery that can be done, to remove the malformed part of the brain. Kyla would likely be a good candidate for that because her malformation is only in a small part of her brain. Unfortunately, we found out that surgery is only 50% successful. I had thought it was 100% successful. He said it was a possibility, if we could not get her seizures under control, that she would not be able to attend school or drive. Ever.

We started upping her dosage of Keppra. From 1.3 mL twice a day all the way to 4.5 mL twice a day. We upped her dosage once a week for two months. Her seizures continued. Finally, in January, the doctor told us we would up her dosage one last time to 5 mL twice a day. If it did not work, we would switch drugs. Keppra is a drug with relatively few side-affects so I was not looking forward to a different drug. Our plan was to try 2 or 3 drugs and then consider going forward with the brain surgery. However, that decision has been delayed because, for some reason, 5mL was the lucky number. Kyla had her last seizure about a third of the way through January 2012. She has been seizure free since then. 

We did another MRI in March to make sure that she really had cortical dyplasia and not a slow growing tumor. Brandon took her in for her MRI this time. They sedated her through IV rather than gas. She did MUCH better. (When she had gas, she woke up screaming, kicking, and crying - and continued screaming, kicking, and crying for over an hour after coming to). However, the IV sedation was strong. She could barely hold her head up in her car seat while Brandon was driving home. She couldn't even eat the ice cream cone he got her. I stuck it in the freezer for later. He had to carry her around. If she tried to stand on her own, she would fall over. Once she could walk, she continued to accidentally run into walls for hours. It was pretty crazy. Primary Children's was pretty neat during the process. They gave her a little doll when she came in. She got to color the doll and then the doll was dressed in a hospital gown, just like her. Then they gave the doll an IV before they gave one to Kyla. She got to keep the little doll, with its IV to help her feel better. They also gave her crayons and a coloring book. I was very impressed comparing it to her first MRI. This last picture shows Kyla totally out of it, sitting on the couch with her baby doll. Kyla is just so precious. She is trying to smile for me, but cannot really figure it out.

The MRI came back exactly same as the last one. It just confirmed the previous diagnosis. So, for the time being, she is on her medication and doing well. I really was able to notice a decline in her ability to develop and learn while she was having seizures. It is amazing how damaging seizures are to development. Even though she was having two, sometimes three seizures a day, most were less than a minute. It is amazing that three minutes a day can cause delays in development. Most of Kyla's seizures included her eyes rolling back, losing her ability to talk, her body slowly lost its ability to move, and she would breath differently. Many times she would realize something was happening right as her seizure would begin and she would turn to me and try to crawl towards me or walk towards me, but she would slowly lose her ability to control herself and would fall over and end up lying on the ground. Like I said, heartbreaking. She did have three large seizures that included drooling, rapidly blinking eyes, and a small bit of convulsing - these seizures lasted upwards of two minutes and scared me to death.

Now that it has been almost 5 and half months since Kyla has had a seizure, it is sometimes easy to forget about this constant fear of her digressing. She acts like a normal four year old girl. She loves animals, plays dress-up, knows all of her letters and many of their sounds. She likes to color and write her letters. She loves to go swimming and play with her friends, cousins, and brother. She throws tantrums and has a hard time listening. She loves to eat, read books, and sing. It is so weird to know that under this perfectly normal little princess is a brain malformation that can cause so many challenges if it chooses. We just pray and hope every day that we will keep the seizures at bay so that she can live a happy, normal, full life. Just like every mom and dad wants for their child. We love her so much.