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. 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.
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"
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!!