Today started out so wonderfully. I woke early with the newborn and got her settled into the day. She fell back to sleep quickly. Thinking my other daughter would be up soon I stayed up and made my morning cup of coffee. I actually got to drink the entire cup while it was still hot. Can you imagine that? Anyway, I was so looking forward to today because it was to be our first outing together alone since the arrival of my youngest. I felt that it was just what the Dr. ordered for the two of us. Tues. mornings are her favorite play dates and she LOVES Tues. I haven’t been able to fully participate in them because the newborn grabs most of my free hands but they both ALWAYS have my attention. I thought how wonderful will this be when she realize’s she get 100% of mommy time today!!

The GD showed itself a little in the AM but we were so busy trying to race out the door that it didn’t really have the chance to manifest into anything yet. At her playdate the GD showed. Which was no surprise I’m used to seeing almost every where now. But there are so many parents in this group that enough of them noticed this AM that something was “off” with her today. I ignored their stares and kindly reminded her that this behavior was to be done in her bedroom not when we’re out. She’d stop quite well on her own, run play and then do a little more GD.

Afterwards we were actually able to enjoy a snack ( ‘nack as she likes to call i) at the local Dunkin Donuts without any GD!! The highlight of the day. Immediately following in the car and at home GD was full blown non-stop. She”d walk a couple steps and stop whimper do some GD and then continue in this pattern until something caught her attention. It was never gone for longer than maybe two min all day except when she decided to watch Polar Express. At that point she actually sat in my lap for a full 20min. that in and of it self was a wonderful treat but without GD – that was the best added bonus ever. That was the last good point of the day. GD totally took over from that point on. It was non stop. She stopped playing and didn’t eat hardly any dinner. Now all day long she passed to very very small amounts of stool. Not to be graphic but more along the lines of maybe she had some gas and some came out. But after that second one …

I put her on her changing table to give her a new diaper. Held her feet together with my hands and put her kness to her chest to wipe her behind. OMG did she flip out. I mean crying, screaming ” mommy no no mommy “, kicking her feet, etc. Next thing I know she passing this huge amount of stool at that very moment!!. And it actually looked like she may have been a little constipated. Thinning she was all do bout 30min later I brought her into the bathroom to get ready for a bath. I laid her down on the floor same as above to clean her bottom and welcomed in episode #2 of the same. She cried and screamed so much that the white’s of her eye’s had turned red!! And yet she passed another large amount of the same.

Then of course she was tired and wanted bed. So, who’s to say the GD was sleepiness from the episodes or if it’s because there’s more. I’m sure she was done moving her bowels. Hopefully when we ake up tomorrow and look at the dark / rainy sky it’ll be the start to another GREAT day.

Posted: October 23rd, 2007 under Bad Days.
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Well the great days have passed and the ‘normal’ ones are back. But let me tell you … two WHOLE days without GD – it was like an oasis in the middle of the desert. Just when I was thinking this can’t possible get any worse my beautiful / wonderful little girl has shown through. It’s been almost a year ( since last Nov. ) that I’ve seen this on a daily basis. It was like having a whole new child seeing her without GD. It has renewed my spirit and given me hope that maybe someday she’ll have the better of GD instead of it having the better of her!!

That being said she’s back to GD on / off throughout the day. Since Fri. it’s been pretty much non-stop but thankfully she’s easily distracted. There just has to be something to this GD and her bowel movements. She had one small one today but every now and then (since Fri.) she’ll grab my leg and cry “mommy, mommy, mommy”. Seems to be when she’s trying to pass gas or move bowels. I wish I knew which it was. Or is she afraid to go in her diaper / constipated. Maybe there’s nothing to it at all. We’re seeing a specialist on Fri. Hopefully she’ll be able to shed some light on this for me.

Maybe I’ll open my eyes in the morning and we’ll have a good tomorrow!! Boy if I had a dollar for every time I said that!

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Posted: October 21st, 2007 under Uncategorized.
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O.K. so I promised to post the results of the Early Intervention Evaluation below is a list of that … ( remember she is 22months old)

Tactile Sensory issues

Cognitive Skills (thinking, learning & exploring): 20-23mos. - The evaluator didn’t test any higher than that because she didn’t see any problems. In fact she stated that had she done further testing my daughter would have have qualified higher in this area.

Physical/motor skills: – fine motor - 15mo., gross motor – 18mo. She showed difficulty in supporting herself while sitting on the floor, she didn’t grasp the crayons strongly or push rubber pegs into a rubber board firmly. Technically called ‘imature grasp’. All things that, per the Occupational therapist who did the testing, are easily overlooked unless you are the one looking for them.

Communication/language skills - (understanding and use of language): Receptive & Expressive 20-23mo. Again she would’ve qualified higher in this area too had the Teacher tested her at a higher level.

Social/emotional skills (interacting/getting along with others, feelings, coping): 20-23mo

Adaptive/Self-help skills (doing things for him/herself): 21-24mo

Suggestions/strategies for meeting outcomes: Well this part is new to all involved parties. No one around here has heard of Gratification Disorder and obviously as a result there is nothing in terms of strategies that are already in place. So we’re all exploring as many avenues as possible to try and come up with something that works in easing the behavior. The current list (which will be changed many times I’m sure) is as follows:

1) Attempt a diet change – gluten free, yeast, dairy, etc.

2) Explore sensory activities

3) Use play-dough, rice & beans on boxes

4) Finger paint

5) Hang on monkey bars with support

6)Develop a behavioral plan – a functional behavioral plan & develop ways to change behavior

7) Work with medical professionals and follow up with Dr.’s - As stated before I feel her worst days are strongly connected to her bowel movements. We now have an appointment with a Pediatric G.I. Dr. on Oct. 26th

Again just another little side note. There is no documentation available as to what others have tried or found to be helpful. If you’re reading this and have already tried these things I’d love to hear some feed back from you!

Posted: October 15th, 2007 under Findings.
Comments: 2

These past three days have been the best since last Nov. She had a really bad Tues. / Wed.  (as far as the G.D. goes) then several huge bowel movements back to back throughout the evening and night on Wed. When she woke thurs. morning she was “normal”.  We ate EVERY meal, played, colored, had wonderful conversations, etc. The G.D. never showed up ALL DAY!!! I went to bed so happy that we able to spend the entire time doing mommy and me activities none stop. I didn’t have to say ” Honey, please stop and sit up” at all!!! She enjoyed a full day filled with her favorite things and never had to stop because G.D. was interferring. I can’t think of enough ways to say what a wonderful day we had. Only another parent / care giver could fully understand without words what this means to me. Here’s the greatest part of all … It was the first of FOUR GREAT DAYS!! A little G.D. here and there but it’s been stopping once she passes gas or has a bowel movement. If neither of those things happen then she still easily stops just by asking. I hope I’m not jinxing this in any way. These past few days I’ve felt like the mother that I was and want to be with my daughter. Why? you ask … because our days are filled with not stop fun and one on one interaction!! The way it should be between a mother and her daughter!! Here’s to hoping this is the beginning of the end …

Posted: October 14th, 2007 under Good Days.
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Last Thurs we were at grandmas house when she really started getting worked up saying ” mommy poopy out! ” over and over. All the while skipping dinner and the “behavior” really getting worse and worse. We spent a half hour on the ‘big girl’ potty waiting and nothing.  There was no calming her. She’d cry, ask to come up and then want to get right back down. Friday was really bad. The morning not so much. But, as the day went on with no bowel movement and becoming more tired the behavior increased. So much so that as she was leaving for a sleep over with her favorite aunt I gave instructions to call should the behavior intensify to anything worse than what it currently was. About an hour after arriving at her house she moved her bowels – which was described as quite the episode – and the behavior stopped immediately.  And hasn’t been present, but for when she’s been really sleepy, all weekend long. What has been here has been very VERY minimal.

Now this morning she sat in her chair like a perfect little angel, ate all her breakfast and then some, and moved her bowels without neither of us noticing. But now tonight the behavior was present and she has been saying every once in a while “mommy poopy out” but there’s been only an extremely small amount… We’re seeing a G.I. specialist on the 26th. Hopefully he’ll find something and help as far as thats concerned. And then this coming Fri. we’re meeting with the individuals who had done the initial E.I. eval to come up with a “routine” and possible a change in diet.

I really hope and pray that we’re onto the right track over here. That someday soon we’ll have her as comfortable as possible. So, that she won’t need to resort to this behavior everytime her tummy, or what ever it is, bothers her.

Posted: October 8th, 2007 under Bad Days.
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I know most parents would be upset to hear there was the slightest thing wrong with their child. But to hear that there is something wrong but for no reason is even more upsetting!! This E.I. eval has given me a whole new avenue to explore which has restored my hope that I can help her even if it’s in the slightest way.

With this in the back of head the times when she does “it” don’t seem so bad.

The behavior was very infrequent today, she was easily distracted and even WAY over tired she hardly did “it” at all. We were able to play, shop, decorate and color. Most importantly she ate all three meals. Though she did wake doing “it” and con’t for a short time it did stop enough for her to enjoy the day.

Posted: October 3rd, 2007 under Good Days.
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With this new found sensory stuff with my daughter …

Have any other children with Gratification Disorder had E.I. evals? Were they found to have sensory issues? Similar to this Tactile sensory? Slight set backs with motor skills / upper body strength? But still age appropriate mile stones, communication ( she actually scored at or above level for her communication / cognitive skills ) and so on?

I was told by the therapist that she knew of two other children in the area years ago who had similar behavior but both had autism of which my daughter definitely does not have. But I have yet to meet or hear of another child who is “normal”  – for lack of a better word – Are there any others out there who are dealing with but with undiagnosed sensory issues?

Posted: October 3rd, 2007 under Theories and Random Thoughts.
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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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