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! 

6 comments:

  1. Dear Amanda,
    Indeed, I have already hung out on your blog a few times...and what a pleasure to see such a great post! I am really proud of Samantha's reaction too! And I am happy to see that she realizes how much help she provided!
    It was a real pleasure to have you both here... We went through the whole video yesterday and we could capture many movements!
    ...results are coming soon!
    Take good care,
    Elise

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  2. ...one thousands apologies... I meant Hannah (Samantha was the previous little girl...I am unforgivable!!!)

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  3. silvia mota ramosJuly 23, 2010 at 10:15 AM

    Hello,

    My daughter Joana Ramos (7 years old) suffers from complex motor stereotypes since she was 6 months old (wheel arms and hands when happy or excited). I Have consulted several pediatricians, neurologists, and currently she is being followed by a psychomotor technique.

    At emotional level Joana is also a child with low self-esteem. All the doctors I consulted say that the stereotypes will pass, but unfortunately ,so far, they are worst and still more noticeable.

    I was really glad when i found this blog .. talking about information on this topic is brutal and helps my anxiety.

    In Portugal, I have been to several doctors and now Joana is been accompanied by a psychomotricity technique that has helped a lot.

    If you have any information you can share, i will apreciate you so much.My e-mail is silvia12mota@otmail.com

    Please,I would also like that you inform me about some books about this subject.

    Yours sincerely,

    Silvia Mota Ramos
    (Lisbon, Portugal)

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  4. silvia mota ramosJuly 23, 2010 at 10:18 AM

    sorry: my correct e-mail is silvia12mota@hotmail.com

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  5. Hi,
    I emailed you forever ago about your video of your daughter playing with the horses but never heard back from you. I hope that you received the email.
    I would like to know more about your daughter, as my daughter (Named Hannah as well, she is 2) does the exact same things.
    She has been diagnosed with Stereotypy, but other than that we don't know anything. We have been given no direction really.
    I would really like to talk to you more if you could please contact me>
    My email is
    Blunderwood21
    It is a yahoo account.
    Thank you very much
    Brittney

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  6. Amanda - thank you so much for posting this info. My 3 year old son was just diagnosed with Complex Motor Stereotypy yesterday by a local pediatric neurologist. We also visit NIH for a rare immune condition that he has, but this appears to be unrelated. I have been very concerned also about the teasing as he has just started preschool and has some emotional/behavioral problems already. I've been thinking about how he can learn to explain on a simple level to the other children why he moves in this manner when he is excited (for him it's anything mechanical or fast!) so it was so inspiring to hear about your daughter's response to another child. Thank you!!!

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