Good evening to all!
I've created a short, informal survey regarding both this blog and the Facebook group. It will help provide some basic demographic information and also allow me to find out where in the world everyone is! It is a private survey and entirely confidential, I am the only person with access to the information.
Thanks in advance, and I hope you and your families are well.
Friday, August 17, 2012
When we first talked with our daughter's pediatric neurologist, he said that the stereotypies will stay with her forever, but get 'smaller' over time. She is 9 now, and she has been subconsciously reining them in for the past two years or so. This is a very short clip of her with hands clenched and squeezing, instead of flapping. You can also see the leg jump, and if you can see her face, she is scrunching her mouth up. Apologies for cutting her head off, she will stop if she catches me taking video. Additional apologies for the stuffed cat photo bombing the view!
Thursday, August 9, 2012
I'm posting this video in the hope that some of physicians, medical students, and other health care providers who frequent this website might have suggestions. This video was posted to our motor stereotypy Facebook group yesterday. Matt recently developed this tremor, and has already been hospitalized with no diagnosis on discharge. He is awaiting appointments with neurologists at IU, but the family is hoping that perhaps someone will recognize the symptoms and be able to provide some insight. A breakdown of the diagnostic procedures already performed and the results are included in the video.
Video has been particularly helpful in getting diagnoses for those with stereotypies, so hopefully this is another successful use of technology that can help Matt and his family get some answers. A Facebook group was created to keep those interested up to date on his progress.
All the best-
Sunday, August 5, 2012
We had family in town this weekend and took them to a few of our favorite places in St. Louis, the Zoo and the Science Center. I also took the opportunity to grab a new videos to share. Excitement is a major trigger for stereotypic episodes, and in the clips I have posted, they are in full force. Interestingly enough, zoos are often the site of many other stereotypy videos, these involving bored or stressed animals. I'm sure many of you have seen those when looking for "stereotypy" videos on the web. Sorry they aren't up close of the face (you miss the facial grimace and upward glances) but you can see the movements in the arms, hands, and legs. You can also see her reach up to touch/rub under her nose a few times, which is also part of her movement repertoire.
FYI, if you are ever in St. Louis, I highly recommend a visit to both the Zoo and Science Center. We live close by, so we have several more recommendations as well, just email me if you are interested!
Until next time - Amanda