Stanford MRI / NIRS Research

We are currently participating in a longitudinal 5 year study on girls with fragile X. Today was the last day of the first research session.. At Stanford

We had two main activities.. To complete, the NIRS and an MRI.

Yesterday we did 4 hours worth of cognitive and language assessments and eye tracking data collection.. Then Holly did a practice MRI while I was doing a parent interview.. I was told she did great and hoped we could immediately complete the real MRI but there was no availability..

I'm sad to report that my fear came to reality and given a day to perseverate on the upcoming MRI Holly ended up having a panic attack and we only got 1 partial scan of the 3 needed. 

She went in with a great attitude  and they let me stay in the room with her but she could not see me. Apparently during the practice she could see the researcher the whole time and she talked to her quite a bit.. Because she couldn't see me she got sad and then anxious and then panicky.. 

The first scan completed but was a bit blurry.. She was crying :-( she came out of the MRI and I tried to calm her down, give her a hug and told her I would stay holding her foot and sing to her. She said she was ready to try again but never really calmed down enough to stay still... So the second scan didn't come out.. We decided we could come back and try a sleep scan later in the summer.. 

I was disappointed because she had done so well yesterday and she was sad she didn't finish but told me she couldn't help feeling sad and alone.. I wish I had known it's possible it could have gone differently.. Really I wish I didn't listen to the researcher and trust "how good" she did in practice.. I was complacent and didn't make all the extra efforts I may have to ensure her comfort.. And help prevent her nervousness..

But it is what it is and we will try again.. She was sad she didn't get a picture of her brain to take home but the researcher said she would email me one.

Earlier today we were successful in completing the NIRS 

"The primary application of NIRS to the human body uses the fact that the transmission and absorption of NIR light in human body tissues contains information about hemoglobin concentration changes. When a specific area of the brain is activated, the localized blood volume in that area changes quickly. Optical imaging can measure the location and activity of specific regions of the brain by continuously monitoring blood hemoglobin levels through the determination of optical absorption coefficients..... 

NIRS can be used for non-invasive assessment of brain function through the intact skull in human subjects by detecting changes in blood hemoglobin concentrations associated with neural activity, e.g., in branches of cognitive psychology as a partial replacement for fMRI techniques.[7] NIRS can be used on infants, and NIRS is much more portable than fMRI machines, even wireless instrumentation is available, which enables investigations in freely moving subjects.[8][9] 

However, NIRS cannot fully replace fMRI because it can only be used to scan cortical tissue, where fMRI can be used to measure activation throughout the brain. Special public domain statistical toolboxes for analysis of stand alone and combined NIRS/MRI measurement have been developed"

https://en.m.wikipedia.org/wiki/Near-infrared_spectroscopy

After set up I was not allowed to stay for the assessment, when I asked Holly what they did she said she looked at pictures of people and faces and some were upside down and some were of statues..

While I've wanted to connect with research at Stanford for a while and in theory it is closer I think so far I far prefer UC Davis Mind Institute were we've done all our previous studies.  They have rooms with two way mirrors so I can watch and/or be included in all assessments and they have a really nice waiting and play area.. And though it's more miles the two days we just participated in racked up 185 miles and with all the traffic is was as long if not longer to commute.. Also in the study in particular because they are working with UNC on this study they had to use an off site MRI machine that was at El Camino Hospitol in Mountain View (has to be the same model/type and stanfords are different) though it was supposedly only 6 miles south it took us 40 minutes to drive there and added 30 minutes to our drive home... That's peninsula traffic for you.. Though we took 280 up to SF and it was beautiful and foggy..

Anyway I've been fighting allergies and a possible cold this week too and we are now all officially worn out!!

Pen Pals

Thank you to all our Fragile X Friends and Pen Pals.  Holly has loved receiving mail.  It is one of her favorite things.  The cards and the letters have been super sweet and the bonus coloring pages and stickers so fun.  I feel remiss for not thanking you individually, and so I am thanking the whole Pen Pal community as I know all of the kids in the group really enjoy this.

Our last Visit to the Mind Institute

Here are a few pictures from our last visit to the Mind Institute. We actually went up twice on a Wednesday and a Thursday. The first day we did several assessments related to a new study using computer software to improve working memory. Holly had such bad attention skills she barely got through all the assessments, and although it would be totally awesome for her to participate in the program, with the theory that an increase in working memory will improve attention and impulsively we have thus far not been very successful. She has to play the game for 15 minutes every day. Mommy is having trouble working it into our daily routine, especially since most days we aren't home until 7:00 PM and she is really tired by then, and on the days we did try and play Holly has a really hard time playing for the full 15ish minutes. She has to complete three of the "games" each time.

On the second day we did the EEG and we did the Stanford Binet IQ test which was pretty amazing. She did this assessment totally by herself, it was the first time. We were able to watch through the two way mirror and she actually was in the room at least an hour. Though she would ask for Mommy quite a bit she was easily redirected and was able to complete the entire test. Her scores were good and we were super happy with her. it was a fun visit.

Dr. Hagerman recommended we continue on the Minocycline, her ANA Levels are fine and we did some additional blood draws. So we will go back again either 5 weeks after finishing the protocol for the Working Memory Pilot or in about 6 months to follow up on her meds.

A Christmas Adventure to San Francisco

I decided to front load our story here and let the pictures all follow, enjoy hearing about our adventure.

So here is our little Christmas Adventure Story. On Tuesday at 2:30 after already having a head over heels play date with Tyler, Isabel calls and we decide that we are going to ride the Bart Train with her and Sara into San Francisco to go to a Fancy Downtown Hotel and look at Christmas lights. In my life I have ridden Bart twice, once about 8 years ago to Halloween in the Castro with my friend Ona and a Second time to New Years Eve in SF at the Clock Tower with Joel, maybe 12 years ago. Besides that, while Holly loves trains she is also recently a little scared of them because once when we picked up Daddy from the Bart station, different from our normal station we went to the platform and it was really loud and she got scared. Since she doesn't want to get out of the car to pick up Daddy any more, but is always excited whenever we see Bart drive by. We plan on Meeting Isabel at the West Oakland Bart station at 4:00-4:30ish where there is supposed to be easier parking and no transfers.

Well first hurdle, Holly says she does want to ride the train, but only with her Headphones, which the day before i realized were missing. I think they are in the truck of our old green car but that is at the Ashby Bart station and Joel doesn't answer the phone to tell me where it is parked and I don;t have the keys with me. We finally make it to the truck and it is not there. So I desperately look everywhere I can think and then call Home Depot to see if they can sell me new ones, of course no one knows what I am talking about and they want to give me either 6$ ear plugs or 89$ wireless electronic Noise Canceling ones. By 3:30 I finally find a pair at Osh and they have then in stock and in the parking lot before I go in I decide to check under the seats of the new silver car. Did I mention I also Called Julia Morgan where we recently saw the Nutcracker and the Berkeley YMCA to see if we left them at either place, as those were the last time I remember having them. Hallelujah, they were hiding under the seat in the new silver car and we are good to go.

We arrive early at Bart and after like 20 minutes to find parking. Somehow we miss communicated with Isabel and she thought we were meeting in SF instead of at Bart, but that god she was just running late rather then already gone, otherwise we would never have made it on the train. We park and walk around the station, Holly iSpying trains as they come in and testing out her headphones and checking out the Saxophone player. Around 5:00 Isabel makes it and I am worried about crowds and rush hour commuters and the late hour, but I put my faith in her. She shows me how to buy a ticket and we head inside to find a broken Escalator, but we find the elevator, and through harsh warnings about not touching any surface inside we ride up to the platform.

Holly is excited to be with Sara and see her, and excited about the train, and though a little nervous holding up well with her headphones. The train arrives momentarily and we are off. It was a bit of a challenge finding a seat, but Holly and Sara were able to. Holly was a little subdued and anxious but mostly enjoying herself, excited to look out the window and talking about how we are going down under the tunnel and under the water where we normally drive over the bridge into San Francisco. She is excited to say she is going to San Francisco where Daddy works. PS I did not tell Joel about this little adventure for fear of him suggesting we don't go. We arrive at the Embarcadero station and we hop off the train, Up Up Up we go past the Muni Transfer, we see a cool band and then ride another escalator all the way up to the City.

First thing out of the passage Holly says, look Big Buildings, so Big. She remembers them from watching Monster's Vs. Alien's when Susan roller skates through San Francisco using a Taxi Cab, and Holly comments on this, looking for the Giant Alien. The Hyatt Regency is right ahead and walking over we see a Trolley, one of my favorite things! Then we head into the Hotel. There are Giant Nut Cracker's which Holly adored, I hadn't realized the impact seeing the Nutcracker made on her until she ran up to him and gave him a giant hug and tried to do Ballet with him and said, I love him. We get to ride two more escalator's up and into the lobby and it is beautiful.

The lights were amazing and it was so totally worth the trip and the wait. Holly was wearing her "Princess Wedding" Dress, which she is also into because of Susan from Monster's vs. Alien's and matches the Decor beautifully. There is a Giant tree, more Nutcracker's life size toys, water fountains, dangling showers of lights, and sparkles and trees and the girls have to much fun running and dancing and exploring. There is a panel of Elevators that look like space ships when they rise and they are made of glass, so we sneak on waiting for a Guest to swipe there key card and ride to the 17th floor where we can look down on all the lights.

I call Joel to surprise him (Now that I know it has all worked out so Beautifully) and he agrees to come and meet us after work (one Bart station away) The girls make friends with other kids and while we are playing it even starts to snow. This is the same snow my parent's set up at this hotel was it last year, or the year before? Holly danced in the snow on the rocks among the trees. Later when Daddy arrived she showed him around and they Danced at the Royal Ball. It was a lovely evening. Around 7:00 we headed back to Bart, with Daddy, Sara, and Isabel and headed home. It was a lot of fun, and we will definitely take another Bart adventure soon.