Short Survey

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.

Amanda

Suppressed Movements

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!

Amanda

ATTENTION Health Care Providers

Hello again-

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-

Amanda

New Videos!

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

 

Stereotypies and Sports

Hi again. I just got an email from a parent asking about stereotypies and sports. There was some concern that their son might not be able to prevent himself from "zoning out" during instructions from the coach. My daughter is a cheerleader and has been in gymnastics, and when the coaches are talking, she is listening! Perhaps other parents have different experience, so please comment if you have input.

Back to school, with a few changes

Well, we are back into the school year, and even with just a few days under our belt I have noticed a few things about Hannah's stereotypy. First, she is now 8 and in 3rd grade (where did the time go?) and she has been getting better about suppressing her stereotypies in public for a few years now. I talked about her movements with her new teacher, just as I have in years past, and so far so good. I have noticed that she will have more movements later in the day, probably within an hour of bedtime. I'm not sure if that is related to the additional stimulus during the day, or if she represses them at school and "saves them up" for later when she can do them at home and in private.

They have also changed in presentation as well. She continues to rub her nose and jump, but where before she was clasping hands and squeezing (as the predominant movement) she is now flapping her hands at her side as she jumps. It can sometimes appear as though she is doing full pushup movements with her arms at her sides. It isn't drastically different, but this is the first time I can remember the movement modifying and then continuing in the modified pattern. Not sure if it is significant, but if you live with a kiddo who has stereotypies, you notice it.

I hope all of you have successful back to school experiences, give big hugs to the kiddos!

Facebook

Just so everyone knows, I do have a Facebook group for stereotypies where people can join up and post comments/questions for everyone to provide feedback on. I find it has been particularly helpful for those parents who have a new diagnosis or are finding the term after seeing the videos. I'm not particularly fond of Facebook, but I will allow that it has been very helpful for parents who are worried (like we all were/are at some point!)

You can find the group at http://www.facebook.com/groups/motorstereotypy/ (link in sidebar as well). We would be happy to have some medical professionals, medical students, and educators on board, so if you are inclined please join up.

All the best-

Amanda