Can't identify odd behavior

My daughter is mildly autistic with some sensory integration problems as well. Since she was not much older than newborn, she has been doing this. The behavioral doc, the OT and the psychologist all say that it is definitely something, but they don't know what. This goes in cycles, she will have about 3 weeks of not doing it, then a week of doing it after naps, a week of doing it pretty much all the time, and a week of intermittant again, followed by a longer period of not at all.

I know, you are saying, so what does she do?? We called it frogging, when she was a baby, because she looked like a naked frog, pulling her legs up and down. Now, we call it rocking, though it is not the typical rocking of autistic and sensory children. She tenses and stretches all of her muscles. She is so tight when she does this that her legs cross at the thighs, she extends them and pulls them back in. Her abdominal muscles tighten and her upper body moves back and forth with the contractions, her arms are extended. If she is holding onto something, she looks as if she were trying to strangle the life out of it. If she is not, her hands are completely open, and she will push against something. There is often tongue thrusting with this, and her breathing is affected. All of her muscles appear to contract and extend together, she straightens up when she extends her legs, and bends forward with tightened abdominals when she pulls her legs back. At her last OT visit, she was unable to do any tabletop activities because she could not stop. If she is given very physical activities to do - riding a bike, jumping, running, then much of the time this will go away while she is doing it. Sometimes, she will have to stop and rock for a bit, then continue. She gets no pleasure out of this - it makes her hips pop, and her legs and hips get so sore she can't walk. She is prevented from doing things she enjoys because she is doing this. Sometimes, she can voluntarily stop it, but only for a moment. It does not occur when she sleeps, but if she is disturbed while sleeping, she will do it until she is completely asleep again. What is this odd behavior and what can we do about it? So far, all we know is what it is not. It is no a sensory integration problem because substitute movements (swinging, for example) do not make it go away. It is not voluntary, as it causes pain and prevents her from doing things she enjoys. It is not compulsive, as it does not provide her with a sense of relief at the behavior's end, and the behavior does not have a beginning and end in that way. It is not a seizure, the neurologist said. We are completely stumped by this. Since our daughter wll be starting pre school in the fall, we feel that it is important for this to be controlled before then, as it interferes with her performance and activity. What is it?

[Kevin Kennedy, Ph.D.]

You are on the right track by pursuing the route of Pediatric Neurology. Has the neurologist commented on the possibility of such conditions as Rett Syndrome (a type of Pervasive Developmental Disorder) or Tourette Syndrome? The types of movement disorder you describe are witnessed in both of these forms of nerologically-based disorders, though your daughter's early development is a bit unusual in Rett Syndrome. Your daughter's symptoms certainly suggest disorder of the central nervous system. Did the neurologist tell you what he/she discovered when testing the cranial nerves? I'd guess that some abnormality was found in that testing. I am not a neurologist, and it may be worth your while to post your question on MedHelp's Neurology Forum as well. Without doubt you are witnessing a neurologically-based condition rather than anything primarily in the psychological or emotional domain (though technically Rett Syndrome is classified as a mental disorder).

[BuddleiaGirl]

None of those tests were done. The behavioral doctor showed the neurologist a video CD I have made of her tensing and stretching, and asked if he thought it was a seizure or not. He thought not. That is all the contact I have had with Neurology at all. The behavioral doc said he thinks it is compulsive, but I disagree. It does not fit any compulsive patterns.

[Kevin Kennedy, Ph.D.]

When your daughter has an evaluation by a Pediatric Neurologist you will know the answer you are seeking, and likely your daughter will be able to receive treatment via medication that will address these symptoms. Let us know.

[BuddleiaGirl]

Thanks, I will. I may have to circumvent the Behavioral doctor since he does not believe it to be a neurological problem.

[Kevin Kennedy, Ph.D.]

Only a thorough evaluation will tell. When such symptoms, which seem to implicate the central nervous system, are present, I almost always err in favor of evaluating for a neurological condition, rather than presume otherwise.