Sunday, November 7, 2010

More New Video...

Here is a video I took the other night at a family fun event on campus.  We were waiting in line to have the girl's faces painted, and she was obviously excited (trigger #1).   Anyway, just another example of the complex nature it can take on when she is standing.  FYI, no one really took much notice of her, especially with the other kids running about.  

Wednesday, October 20, 2010

New Video

Sorry, it's been a while since my last post!  I just got an email on YouTube from a mother who has a son who presents just like my daughter did at this age (~9 months). The movements start around the 1:14 mark.

Friday, July 16, 2010

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! 

Tuesday, June 15, 2010

Message from parent of CMS child (now adult)

I received a message from a parent of a child with CMS who is now all grown up and doing fantastically.  I thought you would all enjoy...thanks again for sending it!

I just wanted to share a message I received from another parent of an adult with stereotypies, thanks again for sending it!

motor stereotypy - the future

Thanks for sharing your videos. I am pleased to know that there is a classification for this behavior. I went to your blog and scanned some of the posts. I noticed that one of the common threads of concern amongst the posters was if this was a permanent condition. Here's a little bit of anecdotal information. I have a 21-year-old daughter who had this behavior from the time she was a toddler. She would flap her hands very quickly in front of her face, grimace with her mouth stretched, change her breathing pattern, and pace quickly on her tiptoes. She had no other comorbidities and could easily be distracted from it, so I always considered this just part of her "normal." Please remember that this was before the internet. You couldn't just easily google some symptoms and get information. Behaviors were not classified as enthusiastically as they are now. I knew no one else who's child behaved in this way. When she was about six or so, she and I started having more in-depth discussions regarding it. I wanted to understand what she was experiencing, and people were starting to make comments about her "strange" behavior. I was very careful to make her feel at ease and avoided saying things that would make her self-conscious. At around that age, she began to slowly develop strategies that made it less noticeable. At 21, she says she still full-out does it, but only when she is alone (and it is less vigorous). When she has an episode in public, I can tell, but only because I know her so well. She has a slight shift in her facial expression. seems that the underlying experience has never gone away, but the outward manifestation has changed. She is, by the way, a very smart, very creative and interesting young woman. I just wanted to share the information.

Facebook Page!

Hi there-

Ning was the site we were using to post information to discuss with other parents of children with CMS, but now they want our $$!  Boo I say.  I went ahead and set up a Facebook page for those that are interested, so please join up.  Just as soon as we get 25 folks on there I can get a custom URL, so join the group and I'll try to keep both the blog and Facebook updated.

All the best-


Wednesday, May 12, 2010

New Website!

I just received an email from Johns Hopkins about their new Motor Stereotypy website.  It looks great and has tons of information on it, so please check it out.