November 4, 2015

Since life never goes as planned we have hit a few bump roads as far as Tyson health goes. For the last month or so Tyson has started doing this unusual behavior where he will wake up, have spasms and cry because of it. We emailed a video to his comprehensive care doctor when they started and he believed that it was happening because Tyson was comming off of some pretty serious medications. So as the weeks went on the behavior started happening more often and getting more intense.

Last week I felt like that it wasn't just withdrawls. I finally got a new video this last Monday of it and emailed it to his doctor again and then also posted it on some Facebook pages that I am a part of that deal with kids who have a variety of special needs. Instantly multiple people said that it could be something called Infantile Spasms. I started googling it and the videos and descriptions fit perfectly to what he was doing. So I instantly got on the phone and went through the phone chain and left messages for his comprehensive care doctor and nurologist with an urgent message to get back with me ASAP. I talked to his comprehensive care doctor within the next hour and then the nurologist within about 3 hours. She wanted us down in Salt Lake by this morning to do an EEG and then figure out if it was infantile spasms or if it was something else.

So yesterday I packed for an hour and made about 15 phone calls and got everything we needed in order. Then Tyson and me took of for Salt Lake. Tyson did fairly well on the drive down but i hit a pretty good snow storm in between idaho falls and Pocatello where it gave me pretty good nerves. Tyson had one of his episodes once we got to Pocatello so we stopped and I cuddled with him for a bit. And then we finally made it to my Aunts house in utah arround 6 PM.

Tyson actually slept through the whole night which was a big blessing for me. When we got up it took me about an hour to get everything ready and in that period of time I accidentally locked myself out of my aunts house when I took a diaper to the trash and I didnt have my phone and my aunt was out. So I found someone who was just leaving close to her house and used her phone to call my aunt and get the garage code. Luckily Tyson was fine for that 5 minutes that I wasn't with him but it freaked me out!

After that we were on our way to the hospital for our appointment. When we got their I met up with my mom's cousin who was nice enough to go with me and we went and got his EEG set up and going. It was interesting seeing so much more brain activity on the monitors then he had durring his last EEG back from this summer. The test lasted about an hour and then they took it off. Tyson was really good but didn't like it when they were putting it on or off.

We then took an hour break while waiting for the nurologist and went and walked through 4 hosiptals to get to the Hundsman Cancer hospital to get lunch. We finally made it back in time and then started talking to our nurologist. She told us that even though Tyson didn't have an episode during the EEG they could tell from the background brain waves that he did in fact have infantile spasms. The treatment for them is to give him an adult size dose of steroids for the next month or two. During that period of time he will be immune compromised, mostly likely have irritability, alertness, increased appetite and we have to watch for higher blood pressure.  He will also be on zantac to help his stomach while he is on the steroids. This treatment has a 50% to 60% success rate. And we should start seeing progress within the next week. And if this treatment doesn't work then we will try other medications but he can't be on the steroids indefinatly because then there will be long term effects.

I wish we would have caught this sooner and I'm sure it would have increased his chances for it going a way sooner but we are where we are now and doing the best we can. So tonight we are back at my aunts house and we will head back to rexburg tomorrow. He has already had one dose of the steroids and we will see how everything goes. Thanks for all of the prayers and people who have helped us and been concerned about what is going on!