Sunday, April 21, 2013

More research at the MIND

While we were at the UC Davis MIND institute participating in the sertraline clinical trial, we participated in another research trial. This was going to be taking an MRI of Logan's brain. The research team is comparing images of children's brains who have Fragile X to those of typical children, and also comparing them to children's brains who have autism. 

We want to help Fragile X research as much as we can, so when we were asked to participate in additional research during our stay, I said as long as we don't have to sedate Logan we would love to help. An MRI machine is very, very loud though. Logan is a deep sleeper, but we practiced every night the week before the MRI scan anyway. We went in after he fell asleep for the night, and put earplugs in and headphones on very carefully so we wouldn't wake him. The MIND institute sent us a CD of the sounds an MRI machine makes and Michael copied it and put it on Logan's iPod. We play Enya music on Logan's iPod/iHome every night for him, so once we put the headphones on we switched the iPod to the MRI sounds. These sounds play for about half an hour. He barely even stirred during this whole process. (He definitely gets that from Michael, not from me!)

The night of the MRI, Logan and I reported to the clinic at his normal bedtime. Michael wasn't allowed to be there since he has lots of metal and pins in his knee and the MRI machine is basically a huge magnet- not a good combination! I had to make sure I had no jewelry, bobby pins, zippers, or anything metal on me or Logan. The tech checked us over before we entered the room. The team was so great, they even played Enya over the speakers for Logan, which they had never done before! I donated the Enya CD we brought and used that night since they said they think it would help children in the future to relax and fall asleep. 

They had a sheet draped over the machine so Logan couldn't really see it, and the lights were down low. Logan thought we were just having a slumber party, since they had stuffed animals, pillows, and blankets on the platform outside of the machine. Logan and I laid down with the music playing, and I read him his bedtime story and he had his bedtime cup of milk. He started pointing out different things in the room, kept giggling since I was laying in bed with him in a new place, then in about 10 minutes he was completely asleep. The team came and checked on us, had me climb down from the platform, and gave Logan a few more minutes to get into a deep sleep. Then we went back in and I put his earplugs in and headphones on. We adjusted him so his head was in position, and then we were ready to go. They had me in the room with headphones on, and when the MRI started it made me jump, even with the headphones on. Logan though, slept right through it! The scan lasted for 35 minutes, and every time the sounds changed in the machine it made me jump. The tech said it always makes her jump too, just because it's SO loud. Logan slept the whole time, just fine! The tech watched Logan's face the entire time to make sure he was still asleep, while working the machine. He of course slept through the entire 35 minute scan.

The team was so great, they even let me take pictures after we were finished. Here is Logan still asleep, after the scan is complete:
 Here are some of the images they got from the scan. They also sent us a dvd so we could see Logan's entire brain in 3D!
I think this is just so cool! It's so amazing that this huge magnetic machine can see inside the human skull. Crazy! Anyway, I'm just so glad we could help with Fragile X research of any kind. They said the doctor would also look at the images of his brain to make sure there is nothing out of the ordinary showing up as well. Overall this was such a cool experience!

The MIND Institute

I've been slacking on making blog posts! We've been so busy, I always think I'll sit down and blog tomorrow, then of course tomorrow comes and I think the same thing. We had some very exciting events happen last month though, so I wanted to be sure to make an effort to get them on the blog. So here I am!! :) 

Logan was invited to participate in a clinical trial taking place at the UC Davis MIND Institute in Sacramento, CA. The clinical trial is being led by Dr. Randi Hagerman. She is the medical director at the MIND, and is just AWESOME. She is a Fragile X expert, she discovered FXTAS which is a carrier condition, and she even climbed Mt. Kilamanjaro to raise money and awareness for Fragile X!! When she invited us to the trial, we knew we wanted to participate but also knew having a 2 hour appointment with her would be definitely worth all the travel! So we agreed to enroll Logan in the trial, which is a double-blind trial for the medication called sertraline. We left for California mid-March. 

We were so nervous for Logan and Baby's 1st plane ride! I don't think I slept at all the night before we left. I had 4 lists of things to pack, 1 for each of us, and a separate list for paperwork for the MIND. We were stressed, excited, sleep-deprived, but somehow made it out the door on time. When we got to security, I was so nervous! They kept sending the diaper bag through the x-ray machine several times, and finally brought it over to me so they could search inside of it. There was a jar of baby food inside that I had forgotten about! For some reason when they tested the sealed jar, it set off an alarm. Which meant they had to do a full body pat-down on either Michael or me, and the agent suggested Michael (hehe). Of course everything turned out fine, the agent said if I had scented lotion on when I packed the jar of baby food that would set off the alarm. Really?!

When they called everyone to board, it hit me just how nervous I was to take Baby on the plane! I knew Logan would do fine, we had his sippy cup ready for him to drink during take-off to help his ears. But Baby is so picky, I didn't know what she would think! Thank goodness our seats were in the very back of the plane. Michael and Logan were seated in front of me, with the seat next to me empty. Both the kids did GREAT! Baby nursed pretty much the entire flight, but that's okay because that meant she was quiet and content. Logan thought the take-off was the coolest thing. He pretty much yelled, "Vroooooom!" He had a blast. He did get a little uneasy during landing, but Michael just reminded him that we were going "Vrooom" and then Logan was happy again.  
When we landed, we couldn't believe how WARM it was outside! Very different from the rain we left in Seattle. We were in heaven! While we were waiting for the kids' carseats, the pilot stepped off the plane. Michael asked if Logan could meet him, and he said of course! Logan got to meet the pilot from his 1st ever plane ride, how cool is that?!
We reported to the MIND institute bright and early Monday morning. Everybody that we worked with was so nice and helpful. It was such a change, having everyone around us know about Fragile X! We didn't have to explain anything, everybody was teaching US for once. The first day was lots of paperwork for us, and lots of testing for Logan. We met with a genetic counselor and went over our family history on both sides. The 2nd day was more testing in the morning, then a physical for Logan. The physician who did the exam was great, he answered all of our questions and knew so much about Fragile X. Then we got to meet Dr. Hagerman! She is so smart, helpful, and energetic! She answered all of our questions about Logan, and she even asked and answered questions about me and my health, since I'm the Fragile X carrier. She approved Logan for the sertraline trial, and we were given the medication (or the placebo) that day. 

While we were in Sacramento we got to do some sight-seeing, and even drove over to Reno one day, and San Fransisco another day. It was so nice to have a little mini-vacation as a family, we didn't want to come home!

We soaked up as much sun as we could before we came home :) We are definitely looking forward to going back to the MIND Institute in 6 months when the trial is over!I would recommend a trip to the MIND institute to any Fragile X family! :)

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