My daughter had her visit with the Pediatric G.I. specialist on Fri. According to the Dr. many children around her age (who are learning about the “potty”) hold in there bowel movements. She believe’s this is what my daughter is doing. Which is dead on to what the OT had said she felt was going on. That bowel movements are a sensory (tactile) issue. Of which she had already found her to have tactile stimulation – sensory issue’s anyway. So, all of this together makes perfect sense to us! In other words my daughter holds in her bowels movements because of either the feeling/sensation of bowel movements or fear of them.

So, the Dr. has prescribed that she takes a daily laxative to try and help move things along sort of speak. So she had started this laxative on Fri. and has had two teaspoons every day since. There has been VERY little GD these past couple days. A few seconds here and there after waking and that’s it. Then today she had a real flare up just prior to moving her bowels (TWICE) and then NOTHING!! NO GD for the remainder of the day/night. So, I really feel in my heart of hearts that this is strongly connected to her bowel movements.  We’ll see …

We’re still working with a behaviorist who has suggested that we redirect her to her bedroom when she begins the GD and also to stick to a tighter schedule so she knows what to except every day. That way there won’t be any surprise’s for her. Since we’ve started aggressively potty training her we run her to the bathroom instead of her bedroom. But 99% of the time she’ll tell us “mommy pee-pee potty”. The only time she won’t is when she has to move her bowels and that’s easy to figure out b/c there’s GD like crazy.  

It’s all trial and error …. if at the end of all this craziness nothing comes from it at least I can say  “I TRIED!!!!”

Posted: October 30th, 2007 under Findings.
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So, I thought that this was all going to be a dream and that when I woke this AM the GD would be here as it has been every other morning for the past year. Well … For once I was wrong!! Thank God!!! She woke up, came right out of her room and sat in my lap to “nuggle” and have our morning “go,go juice”. Coffee for me and milk for her . I just kept thinking any min. now I’ll see it. But guess what … I didn’t. We played, colored, read books, snuggled, ate breakfast, got dressed and had a diaper change – all free of GD. We went through every situation this AM where we would’ve seen it and didn’t.

Then just as she was getting sleepy I saw her press her legs together for  about 5secs ONLY!! I ran over picked her up (nicely of course) and placed her in her bed for her morning nap. She fell asleep immediately WITHOUT GD. Again something I haven’t seen in forever.

I kept saying to myself don’t get too excited this has happened before and by the end of the day it’s back. But not today Today she was 100% the little girl I remember from before this started to control her. It was like I was playing with a whole new child. And 99% of the stress I have in a day comes from me saying “Not here honey., Not now sweetie., Remember in your room only peanut., the different phrases go on and on. What an extremely pleasant day to not have to say anything other than ” Hey what would you like to do now?” and to know we’ll actually do it together. By tonight the GD hadn’t shown itself at all since the 5sec thing in the AM. She ate all meals including snacks and interacted FULLY all day long. She even rode in the stroller / car seat with no GD.

Can you believe this? I really feel that this is so strongly connected with her bowel movements. Which by the way she had another today WITHOUT ANY GD AT ALL. In the past that’s what she would do while trying to pass her bowels. I didn’t even know she had a dirty diaper until she walked past me. That would now make four very large BM’s since tues afternoon! I even changed her diaper without a scene.

I’m so anxious to meet with this GI Dr. tomorrow and hear what has to be said. Now I’ll just have to try and figure out which one of these things cause’s the GD to flair up so badly and for so many days at a time. Is it that she’s constipated or was she once and it hurt/was uncomfortable so now she’s afraid to move her bowels and she holds it in? Possibly that she just doesn’t want to go in her diaper and she holds it in so long? Or is this related to her tactile sensory issue (as per her O.T. bowel movements are part of tactile sensory) that we’re trying to help her with as of last week?

Ironic that this is all coming about now now that I have all this help here and am getting so many different people in the community aware of GD i.e. Dr’s, case workers, social workers, Occupational therapists, Behaviorists, etc. and it’s not just one a piece. We’re all networking together to piece together all these pieces until we find someone with all the answers to our question’s. Here’s to hoping that tomorrow will as wonderful as today –  if not better!!!!

Posted: October 25th, 2007 under Uncategorized.
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I would say today was a GREAT day!! It started out with my daughter waking me up asking to “nuggle (snuggle) mommies pillow”. Who could refuse a request such as that even if it’s at 5:30am. So we snuggled for a while WITHOUT any GD. Afterwards we got up and went into our living room to watch some am cartoons. Of which she’d never be able to do with GD or at least not be able to focus on them long. I know, I know … Yes, I do incourage some am seasame street and little einsteins. How horrible of me. But at tleast it gives us all a chance to wake up and afterwards the t.v. remains off.

Anyway she actually sat and watched the wiggles fully while sitting “like a big girl” the whole time. That’s right NO GD this am. We read books, ate some snack, drank our morning beverage’s and ate all of our breakfast. Again without any GD. This was a great morning!!! I needed to have another great day with her. Since the last two in a row that’s all I want for her now. She really enjoys herself i.e. eating, playing, LAUGHING, etc. when GD isn’t around.

At nap time she started up with the GD again. Not too bad but there. She had a playdate of which GD was present for for a little while then it stopped. We went out and again GD was on/off. She asked while we were out “mommy poopy potty” except there weren’t any bathrooms where we were so I told her we could at home. That was it she never asked again so I figured she’s trying to make conversation. However, after lunch/nap she woke with GD and same thing as last night. The GD showed up and slowly intensifeid. Then while trying to change her diaper that was only ‘wet’ she flipped out on me again. She was screaming, crying, kicking her feet and yelling no mommy all at the same time. But no BM. She kept presenting as though she had to go. So, finally I put her on her potty and almost immediately a HUGE BM. That was THREE large BM’s since yeaterday afternoon/evening. THREE!!! Afterwards she had a great bathtime, we read books, arts and crafts, she ate/drank, colored, you name I did it with her fully enjoying my mommy time without GD!!!

How great it is to be able to do the simplest things with your daughter. I’ll never take days like this for granted and will always cherish them.

I am so anxious to get to this G.I. Dr. to see what he/she has to say about her bowel movements because in light of her behavior over the past few days I’d say her BM’s play a big part in the GD for herself. Again I’m not looking to “cure” her but if this is really a cause for her worst days and maybe just being on something to regulate her BM’s then we’ll have lessened the bad days.

Posted: October 24th, 2007 under Good Days, Uncategorized.
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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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