Tuesday, December 22, 2009
Excitement and Fatigue, 2 contributing factors
When my daughter is excited or tired the stereotypies are much more frequent and intense. In this clip, it's nearly bedtime and the dogs are playing tug of war. The leg flutters happen mostly when she is this excited. With the holidays nearly here and several large family functions coming up, we'll expect to see these nearly all day!
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My son was diagnosed with motor-stereotypy almost 5 years ago. We live in St. Louis, Missouri. We were relieved that it wasn't autism or Asperger's Syndrome. A pediatric neurologist diagnosed him after watching a 10 minute video of our son during a one time episode. We were told there was nothing that could be done for it, not to worry about it, and that he would possibly out grow it when he got older. As he gave this information I felt so relieved that I didn't ask enough questions, but tried to research info. on the internet and found very little about non-autistic children with motor-stereotypy. Our son is now 10 and I searched again today because his behaviors seem more frequent and I stumbled upon this site and others with so much good information. I had the same fears that others parents are listing about peer ridicule at school. To my knowledge our son has not experienced this yet and he's in the 5th grade. He does exhibit behaviors at school (when excited), but much less than when he's at home. He flaps his arms, folds his hands together and twists them, stares intently, and makes a loud repetetive humming sound. Just as I've read, whenever we draw his attention to it he stops, but may start up again. He does this so much in the morning when he's suppposed to be getting dressed. I've seen how he does this when he's excited, but I couldn't understand why mornings have become a prevalent time for this behavior. Maybe he is tired. We try to have him in bed by 8:30, but he's always awake by 7 am like clock-work. I would like to know more about the treatment fcr this called habit reversal and differential reinforcement of other behavior that was alluded to in several childhood motor steretypy articles I read today. Has anyone used them? How does it work? I'm so worried that this is going to get worse which I read today in 17% of cases (I believe that was the percentage) that it can get worse. Thanks fo any information you can give. I would love to post my son's video of his behaviors, but do not feel comfortable for fear someone he knows would see this and he would be horribly embarrassed. He also seems unbothered by his behaviors and tells me he doesn't have an urge to do it and doesn't realize he's doing it until we say something. Thanks.
ReplyDeleteMy daughter is 7 and her teacher just sent me an email saying her "symptom" seems to be getting worse. We have her in OT, but nothing has changed. I started seeing this at only 6months old. I sincerely hope that it doesn't get worse. I have not heard of habit reversal-I have heard of trying to get them to transfer their energy to something else. Like squeezing on a ball, etc. I can't get that to work for my daughter. I am getting frustrated and just want to help her and make it stop.
ReplyDeleteHi,
ReplyDeleteI have found your blog very helpful as I have been on this journey to figure out what is going on with my almost 3 year old son. Looking at your videos has made me feel less alone because my son looks almost exactly like your daughter when he's doing his "behaviors." Autism spectrum disorders have been ruled out by many professionals. We went to a neurologist, who recommended an OT for motor planning. (my son has some difficulty with some motor tasks). The OT diagnosed my son with a sensory processing disorder. She explained to us that the arm flapping, jumping around, etc is a response to the sensory issues he's experiencing. Have you ever taken your daughter to an OT? Have you considered a sensory processing disorder? Just curious if you have any experience with this. Sometimes I wonder if there really is a sensory issue, or if it's just purely a motor issue. He has a few other minor sensory difficulties (like answering to his name in a stimulating environment. He also gets easily distracted and off topic of what he is doing when there is a lot of stimulation in the room, and he'll start pacing aimlessly). Other than those things, though, he does not really exhibit many sensory issues that I can see. He's not overly sensitive to any stimuli at all. But the OT explained that the arm flapping and jumping and pacing back and forth on his tip toes is his way of "sensory seeking" She said his "engine is slow and he is seeking out alerting activities in order to organize his nervous system." I guess the way she sees it, it's like his unconscious attempt at waking up his nervous system.
I guess I was just wondering what your thoughts are about the whole sensory processing disorder, if any?
My 2 1/2 year old daughter was diagnosed with Non-autistic Stereotypy today. She has been doing her "movements" since she was about 6 months old. She screws up her face and makes fists either under her chin or next to her shoulders.
ReplyDeleteI had no clue what this was and stumbled upon your blog.
Thank you for posting all of this. I am looking for another parent that is going through the same thing though. I don't know what to expect....I guess the unexpected.
She is so bright and happy I can't imagine this going on for the rest of her child hood.
Thank you
Brittney
Thankyou so much for putting this blog together. My daughter has been doing these movements since she was 2 1/2, she is now 7 and they seem to be getting worse. Her docotor told us not to worry about them.After doing some searches about odd movements I came across this blog, because of this blog, we were able to figure out what these movements really were. We saw a speacialist this week, who confirmed. My daughter seemed to be doing her movements while she would stare at a toy or was really excited. This week, I have found her doing them while looking at a cup, the wall paper and a box of Ritz. Does anyone find there kids doing them while looking at non exciting things like a box of crackers ? Has anyone had good results with theropies ?
ReplyDeleteMy 5 1/2 year old son was diagnosed with this last year. He was previously diagnosed with sensory processing disorder, motor planning delay and bilateral integration disorder. In addition to PT and OT that he received for a year and a half, I have also been taking him to a sensory gym for the past year. I just want people to know that it may not be sensory. Nothing that the OT at the sensory gym has tried (and she has tried LOTS) has worked. She really is stumped by him and we are both beginning to believe that all the therapy in the world will not cure him of these movements and the more I read about it, I don't think there is anything that will. Johns Hopkins is currently doing research on this disorder and I suggest that everyone on this site take a look at what they are doing and maybe be a part of it. I hope this helped at least one person. Linda, Ryan's mom
ReplyDeleteStupid me! I didn't see the earlier comments about Johns Hopkins. Has anyone met with Dr. Singer? We have an appointment with him in November. My son was too young for two of the studies and disqualified from the other one. Thanks. Linda
ReplyDeleteI noticed my daughter flapping her hands and stretching her mouth when she becomes excited at around 7 months old. At first I thought it was cute and then her actions became more common and mostly happened when I was feeding her. She seemed to show signs of excitement at getting her food. My daughter is now 1 year and 2 weeks old and both my mother in law and I have noticed her actions becoming more frequent. I have made an appointment to see her Paed next week. My husband seems to brush off her movements putting it down to excitement but deep down I know something is up. Thank you so much for posting the videos. My daughter resemebles the one posted with the little 9 month old boy. We live in South Africa and this is the first I have heard of this condition. If anyone has any advice please feel free to offer it. Thanks again, Tina
ReplyDeleteHello! thank you so much for posting this blog! it was your video that i found that made me make the connection to what my son is doing! i had exhausted all other disorders, while this one, visually and descriptively 'fit' what my son has been doing for many months. he is quite young still, (under a year), but we went to the neurologist today who confirmed my suspicians. she said he should outgrow this, but, i suppose we will just wait and see. for now, however, i am going to look into behavavioral therapy and distraction techniques. keep everyone updated! thank you, again!
ReplyDeleteMy son is 8 years old and has been flapping his hands ( when excited, nervous, frustrated ) for as long as i can remember. it seems to be getting worse ( or maybe we're more aware of it now that he's older and it seems more " inappropriate" at his age? ). But i would like to know who would be the best person to talk to about this to see what's going on - family doctor? pediatrician? pediatric neurologist? the school's OT? any other suggestions? thanks...
ReplyDeleteMy daughter is 4 and claps her hands together with a very intense look on her face (sometimes even holding her breath). When she was 2 and 3, she wiggled her fingers above her head with the same intense look, but it has changed to hand clapping as she has gotten older. Sometimes she shakes a stuffed animal or a toy with that same intense look. She has no other symptoms. She is a very smart and sweet girl. I have asked her why she does what she does, and her answer is always "I just like to". I have worried myself to death over this. Will this go away? Will this get worse? What do I need to do to help her? I have an appt. with her regular dr. next week to try and get a referral to a pediatric neurologist. I wish someone could just let me know if this is fixable.
ReplyDeleteHi Everyone,
ReplyDeleteI am not sure how I came across this forum, it has been a very long time since I have searched for information on the behavior that I've come to know as "stereotypic excitement disorder". In any case, this is our story. My oldest daughter was "diagnosed" with SED at the age of five. We noticed her hand flapping and face grimaces when she was a young toddler but it became very noticeable at around three years. Well meaning and concerned family member's really started to get to me so just like all of you, I went everywhere and to everyone looking for help for her and answers for me. The last professional (a highly recommended neurologist) that I saw was the one who gave the official diagnosis. He basically told me that her condition was heredity, caused by the way that she processed stimuli and that she would probably grow out of it. I remember leaving his office a little relieved, a little defeated and frankly a little ashamed. Here I was with my beautiful little girl at yet another office looking for a cure for what was wrong with her. As she sat there playing perfectly healthy, perfectly happy and perfectly bright,I knew there was nothing wrong at all. It wasn't that I needed her to be 'perfect' I was just so worried that her behavior would make her stand out and become a target. I was protecting her is how I felt in my heart. Well I guess that was one of my first of many rookie mistakes! lol I can remember praying at her preschool shows that she would not be picked on to answer a question or sing a song because I knew that she would go into "flapping overload" if she got excited and then I would have to deal with the stares of the other moms as they wondered to themselves (or each other)if she was autistic or challenged in some other area. Funny thing is...other people did notice but rarely did they judge. At that age, other kids just saw her for who she was and not what she was doing. It was really just ME who was suffering from her "disorder" and I knew that I had to make some changes. So I did and I am still still doing! I thought about trying different medications but quickly decided that the risks far outweighed the cure (if there even was one). I just couldn't reconcile the idea of giving my child medication for the rest of her life just so she wouldn't "move her arms". I hope one day she will become a mother herself and worry about the consequences of long term meds on her health. Anyway, my daughter is now about to turn 13 and is an amazing kid. Still bright, still beautiful and still HAPPY! She does well in school, she has a couple of really nice friends, and loves music (especially One Direction!) I suspect that her condition has made her stand out from time to time in not such a favorable way but ya know what..she deals with it. She doesn't really do the grimacing anymore but she still does a "modified flap" especially when she is excited or nervous. I guess the point I wanted to make is this...these are our kids and the best way to protect them is to make sure that they know they are loved. Kids will be kids and they are singled out for all sorts of reasons, good and bad. The best thing I have found to get through this vocation called motherhood is Prayer! I know that our kids are being taken care of by someone far more powerful (and let's face it, far more qualified lol) than me! Best wishes to you and your amazing children. Pray for guidance concerning your children and listen for answers. I truly believe with all my heart that as parents we know when there is really something to worry about. Always trust your gut! PS. I have 3 other children and they all "flap" to some degree! God Bless and thanks for listening.