Research at the NIH

My daughter and I went out to the National Institues of Health (NIH) in Bethesda, MD last weekend to participate in an EEG study that Dr. Singer is working on.  It was listed in an earlier post, here are the details on the study:

Brain Activity (EEG) Studies
Our overall objective is to study the cortical (brain) activity preceding and during involuntary stereotypies and to compare it with activity related to normal voluntary movements. Electroencephalography (EEG) analysis has great potential to provide new information about the pathophysiological mechanism of motor stereotypies. More specifically, it can answer whether cerebral activity related to these repetitive, rhythmic, prolonged involuntary movements is similar to the activity responsible for the control of voluntary movements. This study merges the expertise in identification and characterization of motor stereotypies at Johns Hopkins with the electrophysiological resources at the National Institute of Health (NIH).

The first day we met with the neurologist, Dr. Beth Belluscio and the research scientist, Dr. Elise Houdayer to go over the study.  Dr. Belluscio did a short neurological assessment afterwards and asked Hannah about her movements.  It was actually quite entertaining to hear Hannah discuss them with someone else, and some of her answers surprised me.  Dr. Belluscio asked her what she thought about while she was having a stereotypy and Hannah said, "riding horses."  I'd asked her before on a few occasions, and she always told me, "I'm just happy."  Makes sense, as riding horses is her favorite thing to do.  When we were done with that they set us loose on the DC Metro area, but alas, we didn't cause much damage.  Frankly, it was too stinking hot to do much more than lounge at the pool and watch a few movies at the nicely air conditioned movie theater, but hey, we still had fun! 

On Monday we went back and met up with Dr. Houdayer to get Hannah wired up for the EEG.  She was a bit scared at first but after she realized the sensors wouldn't be applying any charges she relaxed.  She was pretty homesick by this point as well, so that frustration added to a new experience had her uneasy.  We then went down to a room in the day hospital and she was basically allowed to watch movies and play all day.  I was worried at first she wouldn't have many episodes, but once she got more relaxed and found a movie she liked on the TV, they started up and I think they were able to record quite a bit of activity.  After about 4.5-5 hours of hanging out, they took off the sensors and we hopped on the shuttle to the airport.

It was a fantastic experience, first because I'm a self proclaimed "research nerd" and the NIH is the epicenter of research in the States, and second because Hannah has already used her experience to help children she comes in contact with better understand what she goes through.  She actually had an incident at her daycare when she got back where a boy teased her for her movements.  Hannah did get upset, but then she tried to explain the stereotypies to him.  Her teacher reported that she told him, "I can't help it, and there are other kids that do this just like me.  That's why I do research to help people understand."  It was a pretty proud moment for me!

A BIG THANKS goes out to Elaine Considine, the nurse that coordinated our visit and answered so many emails from me, Dr. Beth Belluscio, Dr. Elise Houdayer (who has seen the blog before...awesome!), Jessie, Jackie (thanks for the book recommendations!) and Michael (that darn glue!).  They helped make our visit a one of a kind experience, and I certainly appreciate their hard work!