SO here’s something interesting!! The E.I. eval actually found something that all these Dr.’s have missed!!! I’m not sure yet of all the details. I’m waiting for the written report from the evaluators but my daughter was found to have sensory issues – I believe the exact term was tactile sensory- and some very slight motor skills / upper body strength issues. I hear that sensory issues are on the rise. A friend of mine said something like 1 in 164 kids now are diagnosed with sensory disorders. I’m sure how absolute that statement is – hear say for me but it came from a very reliable source.

The gratification Disorder may be something she uses to calm herself because of this sensitvity to her environment. So there may actually be a reason why this has continued to get worse !!Much better than what I had been hearing – the same response over and over - ” There’s no real cause it just is a part of normal development and it will pass.” May also explain why she increases in the behavior when she needs to move her bowels – she’s extra sensitive!!

So because everyone I’ve met so far was so quick to say ” Yeap Gratification Disorder” and never bothered to explore other possibilities for the rise in behavior this may have gone unnoticed and, like I used in the pacifier example, may have gone unoticed her whole little life until she out grew her sensory issues ( if that’s possible). By which time I bet she’d continue with the behavior out of habit instead of neccesity for soothing.

So I’m glad I took it upon myself to continue to explore as many options as possible. I’ve learned something more about my daughter and hope this new found info will help us come up with a system that works for her and helps lessen this behavior that she’ll hopefully grow out of faster if we can pin point what it is exactly that bothers her.  And if this never helps the Gratification Disorder itself at least in my search’s I’ve found a way to help my daughter when I didn’t even know she needed help! So at the very least soemthing good is coming from this. That’s what I’m trying to say.

As soon as I get the wrtten report I will post what they’ve found / said.

But the night of there visit ( three more since ) I layed in bed with her at bedtime and just gave her a very lite back rub and she fell right off to sleep without doing “it”. So just maybe … fingers crossed

Posted: October 3rd, 2007 under Findings.
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The list of things I haven’t yet tried would be much much smaller than what’s about to follow …

I’ve tried everything I can think of …

New carseats with different material’s, padding and seat positioning

More clothing vs. less clothing I plan on very soon trying tighter clothing.

Padding on the car seat straps ( this at least has kept her inner thighs from getting so sore)

More sleep vs. less sleep

Letting the behavior go all together vs. constantly saying “no not here, not now, please sit up and cross your feet.” ( she will now at times stop herself and say ” cross feet ” and actually do it! Not for very long on the bad days but I know it’s a step in the right direction.

Designating a spot for it ( I’ve noticed that sometimes she’ll now take herself into her bedroom )

Toys of all kinds

movies of all kinds

snacks of all kinds

more activites vs. less activites

just recently I’ve started exploring sensory related issues i.e weighted objects, comforting back rubs, etc.

Had an E.I. eval done ( early intervention b/c of how this is affecting her on the bad days )

Moved her to a toddler bed thinking if she can put herself in bed or get out when she wants …

Posted: October 2nd, 2007 under Actions Taken.
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Today was a bad day as far as this is concerned. It was pretty much none stop from shortly after she woke until shortly before she went to bed. Today was a busy day for us as well. It was the 43rd week she attented her little gym class. She has ALWAYS loved this environment and participated fully in the programs and activities. Today she was participating but would stop frequently to ” cross her legs”.  At one point while the instructor was blowing bubbles she just sat down on the floor ( indian style ) wasn’t doing it but it was not typical of her to not want to play with the bubbles! Was she tired? Yes, a little but no more than normal.

I purposely kept her awake after so she would sleep for the babysitter later on in the early afternoon. So, she con’t with the behavior to the point where, for the first time ever, I had to tell a none family member about the disorder. My brother-in-law almost called 911 the last time he had her ( prior to knowing all the details ) because she remained on the floor with this posturing and wouldn’t respond to him in any way. Anyway I left for my appointments and when I returned I found that she had taken a short nap and woke crying, cranky and saying ” poopy out ” con’t full blown with this behavior to it’s none stop intensity and had FOUR bowel movements in a 3hr time frame. Even after I arrived at the house she still con’t with the behavior.

Once home she still con’t with the behavior then the same thing. She starting saying “poopy out” and had yet three more  crying/screaming fit’s with the passing of her bowels. However, once she had a new diaper and all was done the behavior stopped. This is why I feel it’s also connected to the bowel movements and I wonder if she doesn’t have some sort of a GI disorder.

Posted: October 2nd, 2007 under Bad Days.
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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? 

Posted: October 2nd, 2007 under Theories and Random Thoughts.
Comments: 1