Once again I realize I’m not a doctor. But I’m not sure that this “disorder” is JUST that. I really feel in my heart of hearts that there is more to it. Per the doctors she’ll “grow out of it”, “normal part of development”, & “she’s not uncomfortable in any way”. Except I haven’t recieved ANY answers to my many ques. and I feel that she’s doing this because of some underlying issue that’s being missed. The ”title” doesn’t bother me. Quite honestly I don’t care what it’s called. So, please know that I’m questioning this all because I’m concerned for my daughter and not because of a “disorder” title hovering over her head. Her quality of life these past few weeks with this behavior increasing has been dismal. I do agree – yes - that it’s a normal part of develpoment and she’ll at some point out grow it. But will that be because we’ve missed something underlying for so long that the problem had fixed itself and then the behavior stopped?

She has very very good days where I don’t see the behavior at all. But these days are usually followed by days of no play, no meals, no socializing, etc. How then can it be possible she’s (a 22month old toddler) enjoying herself. I know the other children I see her age when presented with their favorite toys or if their toys are being used as a bribe will do whatever it takes to get these items. My poor little girl will stand run half way and then lay on the floor looking at her “reward” doing this behavior. You can’t tell me that it’s that enjoyable for a little girl so much so that she’ll have the controll to choose this behavior over her toys or whatever it is that’s being presented to her. Children this small think only “I want it! I want it now!” I find it hard to believe that she has enough self control to look but not touch her favorite toys and do this instead.

I’m not trying to say in ANY way that all of these specialists and Doctors are wrong in their finding. I’m just questioning is it possible that there are some aspects of this that haven’t yet been explored? But if they already have it would be nice if someone would make the knowledge public so that curious & concerned people like myself can find the answers to the questions that they’re looking for.

 For instance questions like…

1- Does this in increase in intensity / frequency before it gets better Or does it just increase?

2- Is it possible that the children in this case study using this behavior to “sooth” themselves actually had underlying problems that went undiagnosed and by the time they could communicate the underlying problem it had passed. But by then this behavior was being done out of habit and a reliable source of soothing rather than neccessity. For instance a newborn/baby with severe colic who is given a pacifier for soothing, colic passes but the child is still allowed the pacifier. Years later he may notice that other children don’t have one but it’s been his source of comfort for so long he doesn’t want to give it up.

3- Are there any patterns to it? For I’ve noticed that in addition to the case study / documented tired &  bored factors my daughter seems to have her worst days when she needs to move her bowels. At which she definitely does not look like she’s “enjoying” herself. She’s crying/screaming and is ‘unsoothed’ even with this behavior.

4- If distraction is the only course of treatment and it doesn’t work on these really bad days has anyone been successful with a different method? What if distraction just doesn’t cut it? Are we suppossed to just ignore the child all together and let them skip a day of living i.e. meals, play, interaction with others and so on.

5.  Is it genetic? How about are there any cases where more than one child has this – siblings?