Monday, January 18, 2010

Life after Mayo the 2nd time to Mayo the 3rd time

Life after Mayo the 2nd time to Mayo the 3rd time was interesting to say the least. At the time we had Xander in soccer and baseball, he actually did well in both but a bit better in baseball. He was going to pre-school 5 days a week, and totally soaking it up. The seizures had not changed, but we thought that in no time soon would we have this figured out.

Well then the seizures started becoming stronger, more frequent, and occurring at odd times. Xander still had is "Aura" that would let him know before he had one, and usually give him enough time to advise one of us, but the time was a bit shorter. He wasn't recovering as fast from the seizures, and his right hand started to spiral downward fast.

For example, he would usually not have them during the day, and now it was becoming more commonplace to see that happen. The poor boy even had one during one of his soccer games. He was in the pre-game running around with everyone, when all of the sudden he sprinted to us, from about 30 ft. away, and had a pretty bad seizure. Sarah managed to break his fall, as he didn't reach us; it lasted about 30 seconds and it was heartbreaking. Everyone was staring, and I don't blame them, I would have too and I have a wife who stares all the time, but it's hard to take when it's your kid. Being the trooper he is, he shook it off, and went back to playing. Parents came up to us concerned, and I am sure there was one or two just being nosy, but oh well.

It was during Sep.-Dec. that he started falling and hitting his head a lot more. That really didn't get any worse until we called about how bad his seizures were getting, and they put him on Depakote. Once again we had to deal with his mood swings, and his attempts to adjust to the affects the medication had on his little body. It was hard for us, and I know it must have been even harder for our X, after all it was he who had to actually go through it. Depakote had the same results as all the other drugs, it worked well for about a week, and then it was back to craziness. The worst part about Depakote was the fact that it stole his "Aura". The next thing we knew he was falling all the time and cracking his melon, leaving hematomas the size of tangelos.

Now Xander knew about Hematomas, and would talk about them, but now our twins, who could better understand things were talking about hematomas. You know your son is falling and hitting his head way too much when 2 1/2 year olds are saying "My Tomie hurts" everytime they bump their heads. It was because of this, and the fact that Xanders head was starting to look like a golf course, that we finally got him a seizure helmet. It's not really a certified seizure helmet, Sarah made it much more fun for him by getting him a Boxing (sparring) helmet. He loves it, and has even worn it to preschool.

We had X on very high levels of Depakote, tegratol, and carbomezipine, all at the same time, and none with any visible results. He was falling all the time, very emotional, and just not himself. He looked like he was high all the time, we were not the only one to notice this as friends family and pre-school teachers all mentioned this. We could no longer stand it and called the Mayo again. After playing phone tag for the better part of a week we finally made contact. We were told that they would look over all of his files again, and give us another call.

The next phone conversation we had was intense, and yet had Gods hand all over it. Dec. 9th 2009, I was working and so happened to stop by the house to pick something up I had forgotten. I used the restroom, and the phone rang, Sarah answered and I could tell be the tone in her voice that it was serious. I finished and walked up to her, she put it on speaker and I could hear Dr. Patterson explaining that there was concern over his condition worsening. He also explained all the possible different things he could have, to his credit his tone was perfect and somewhat comforting, even though his news was not. He then told us that we could guess all day long but it was time that X was monitored for a period of time. He explained how serious the diagnosis could be and the possibility of Rasmussen syndrome. He then explained what Rasmussen syndrome was. We agreed to the monitoring and he advised that he would call and schedule the appointment, he also stated that due to the seriousness of his condition X would now be seen by different doctors.

Here is a good link to what Rasmussen syndrome is--

We hung up, and Sarah cried while I forced tears back. I still had to go back to work and let them know I was going to need the rest of the day off, I couldn't go in there all swollen eyed, and stuffy. I let my co-workers know I was taking the rest of the day off, got in my truck and cried like a baby. I begged and pleaded with God not to let this happen to my baby. In the middle of all of this I felt as if God said "Call Edwin (My cousin)" I was like WHAT? I did, and that was what I needed. He prayed with me, and I felt the peace of God on me as I walked into my house.

The next day Mayo called and we would have our appoint for that next Mon, the 16th. The next few days were tough on us as we tried to process the different things X might be diagnosed with. We also had to pack and make plans to go. Lucky for us, my parents and sister live close by and offered to watch our boys, along with other friends like Mindi and Donnie who stopped by to check on them. We were able to go up to the Mayo without the twins, making it easier for us to totally focus on X, and all the information that would be thrown at us.

I will have only one more historical post, and that one will entail the week of monitoring. I will finish this last trips appointments as well, then I will finally be caught up. If you have a child with Epilepsy and would like to contact us feel free to do so. There is so much more detail we could go into, but i am just trying to cover the basics and cover the history, as many know as far as detail, I could talk/type for hours, but it would get boring for other readers.

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