Mayo here we come, again

So after our first and successful trip to Mayo, we started feeling better about everything. The medicine at first seemed to work, the frequency lessened, and then about a week later it seemed as if the floodgates had opened. Xander used to tell us that he "felt" the "shakes/wiggles", but they never affected him that we could see, after about a week on meds. we could see.

We called the Mayo and they recommended upping the dosage since it was very low. So this is how it went..... X started taking Teg. on the 2nd of April, 1/2 a pill 2 times a day. By June he was taking 1 1/2 Teg. 2 times a day. The seizures seemed to only be affected for a day to 5 days, then the seizures would come back. Sometimes stronger, other times weaker, it was so inconsistent; and we were so frustrated.

It was around July 7th that X's eye began twitching as well, or at least that was when we took notice of it because it was so consistent. I think July was when it really started becoming serious. We had been making sure he was getting good sleep, taking his meds, eating better, getting a nap, watching less TV. All the little things the Mayo told us to do and more, the result was disappointing, more seizures. At this point there was an urgency to find some sort of relief for him, we called the Mayo and they scheduled another appointment. This time more test would be done, and only Sarah would go with him. I watched the twins during the day and my parents watched the twinkies while I worked. It was hard only for the reason that I wished I was up there to hear everything, and to ask questions, and to be with them. I had to trust and rely on Sarah.

It was sometime in July that we had his next appointments, it all worked out, and the Mayo reevaluated Xanders condition. He had a physical, and some more blood work done; it was also around this time we started to notice that he began favoring his left hand, but only slightly. This was mentioned to the Doctors and they asked us to keep an eye on it. Sarah informed the Dr.'s that he was averaging about 5 seizures a day, and they were more aggressive than before, and now they were including his eye. They found all of this interesting, and mentioned stacking his meds. Sarah said she would have to talk it over with me. Sarah told me the Neurologist suggested X go on Keppra, I was not thrilled about this, but I knew that there were times when more than 1 medicine had to be taken in order to control the seizures. .

Keppra was a disaster to say the least; it worked for about 3 days. He was so emotional, and would do the oddest things. He would walk up to us or his brothers and just start punching, he even did this to friends or visitors. The breaking point for me came the day Sarah and I were talking about his behavior in the kitchen. I will never forget it; he came in, sat on the kitchen floor and told us how much he disliked how he felt. He told us "I just want all of this to stop, I feel weird". I was so upset at that statement at the time, and can vividly recall how my heart dropped when he told us that. The kid was 4 years old, on top of that he was telling us how the medicine was messing with him. That was all I needed to hear, Sarah and I knew our perceptions were correct, and she called the Mayo that same day. We had to wean him off the Keppra, but it was worth it, we got our sweet Xander back.


August was no better for us, we would have a day or two with as little as 2 or three seizures, but most days it was 5-7. We decided to start him in sports since he loved them so much, it was baseball and soccer for our X, and boy did he love it. Our only concern was him having a seizure in front of everyone, or his little friends. We also decided to keep him home one more year, we felt like school would have to wait until we could get a hold of these seizures better. A decision that I feel was one of the best that Sarah and I have made.

Since Sarah kept in constant contact with his Dr.'s, they asked us to have a local hospital perform an MRI with contrast. September 7th was the day, and it went off without a hitch. Same rules as always no food, or drinks after midnight, and the test would be done mid morning.

The results were in before we knew it, and it showed everything normal. We were hopeful that X would be able to grow out of these seizures, that they would not plague him his entire life, and that he would never know a lifetime of seizures. I distinctly remember thinking that it was good news, everything is normal.

The next few months would prove to be very confusing, and at times depressing. We would not "feel" ready for the news that we would receive. Thinking back to the early part of 2009 seems like a lifetime away; if you would have told me then that our family had some very trying times ahead, I would have never imagined this.