I am still here and reading all your posts. Some how time is just flying by and I didn’t realize how long it’s been since I wrote something. We do still have GD in our life ( now 3 &1/2 yrs old) it unfortunately hasn’t gone away completely. It does still show up worst when a BM is coming or she’s bored. So we’re still trying to keep her busy and regular (bm’s).

It is upsetting that it’s still here with all we’ve done to help control it BUT at least we’ve learned how to control and minimize it. She has gotten much much better about putting herself in her bedroom to GD. We just keep explaining that it’s o.k. if you do it you just need to do it in private. Just trying to get her to understand it’s nothing to be ashamed of or feel embarrassed about juts need to learn about it. Which has also helped me !!!! Just to hear myself nicely explaining to her the do’s & don’ts, if you will, of GD has been - um - how do I say maybe calming? to me. I guess what I’m trying to say is that instead of getting stressed out about it - which only increase’s her stress - we stay calm and talk ourselves through the bad days. It does help!!! ….

As far as  further progress - it’s the same. Nothing has really changed and there’s no”service’s” being recieved and there hasn’t been since last oct. / nov. It seems that we’ve hit the “best it’s gonna get” stage. But I’ll take where we’re at now over where we were at the begginning any day.

I still do look forward to all the e-mails from other parents and person. There are still times when this GD feels very lonely and does get to me. So, it’s nice to be reminded every once and a while we’re not the only one’s learing how to manage and cope with this.

The response’s from those with GD have been some of the most helpful piece’s of advice that I’ve recieved !!!!!!!

Posted: June 5th, 2009 under Uncategorized.
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This past Saturday she woke and asked to go on the potty. After she went (pee) I kept the diaper off and got out her sticker chart and “Ta Da” a whole day with NO accidents - including her own (unforced / not traumatic) bowel movements. She even cried at naptime when I went to put a diaper on her. So I kept it off and she woke two hours later in a dry bed!!!!!

Ready for this … NO GD the entire day!!!!!!!!! Not even revolving around her bowel movement.

A perfect repeat of Saturday on Sunday. That was two full days back to back without diapers or GD. Her behavior / mood was incredible!!!!!!! She’s been like a wonderful little girl with no worries It’s a priceless thing to see.

Monday we went on a day trip. Not knowing how serious this new transition was I put her in a diaper. Her behavior remained wonderful. No GD during the car ride there (two hours), while at our destination no GD she listened very well and throughly enjoyed herself in all activities. On the way home, extremely over tired and no BM her GD kicked up like crazy. However, the second the car pulled into the driveway I ran her into the house and put her on the potty (ours) and imediately she had a HUGE bm. All Gd behavior stopped and I haven’t seen it since.

Today she wore, for the entire day, her “big girl undies” and we con’t on throughout the day again ALL pee / bm’s on the potty and NO gd. Full attention to all activites, ate all meals, completely happy the entire day!!!!!!!!!!!

She even asked to NOT wear a diaper at bedtime. Not sure on what was the “right” thing to do. With my fingers crossed hoping this was a good compromise I put her in a pull up. Oh but please … please … have this be the end all.

These past couple days have been like a vacation. She’s enjoyed every minute of the past three days. I look forward to waking in the morning and hoping that she’ll continue with this. Hopefully she’ll realize now that she’s in control of herself and that GD will never again control her but rather she’ll be able to control it !!!!!!!!!!!!!!!!!!!

Posted: July 22nd, 2008 under Good Days.
Comments: 3

Yes!! we’re still here and the GD is still present. It has started to lessen a little - AGAIN. However, I do still feel that her bowels (constipation) cause her GD “flare” up. Once again, despite a diet full of fiber - fruits, veggies, flax seed, etc., her constipation has returned and with it her GD full blown. Little side note: we had for quite a while stopped using the Miralax at all because she had become regular and the GD had almost disappeared.

Though I don’t think I’ve made it clear enough on the site that her GD behavior is not nearly as severe as it was when this all started or even at present.  She does stop now, will eat, play and so on. BUT if she’s very constipated then she will con’t to talk to us through her GD telling us she needs to move her bowels (instead of running to her bed to GD she’ll just cross her legs wherever). And lately she’s started saying ” mommy my butt hurts” or ” the poopy hurts” Which just leads me to believe that all along I’ve been right regarding my daughter.

The bathroom drama has started up again. Fighting with her on the toilet to move her bowels. Which is a difficult situation because I don’t want her to fear the toilet nor do I want her to hold her bowels because she’s afraid of that too. Yes, I have tried BM’s in the diapers vs. toilet … I think the toilet is best for her right now because she’s very aware of everyone using the toilet and has showed interested in losing her diaper all together. Maybe that will change things …?

Her Bm’s are turning gritty again (sorry for the roughness of description) like sand from the beach mixed with normal -soft bm. Which I still can’t believe is normal. However, the last time this happened we had her tested and all came back normal.

Still working with OT twice a week, Nutrionist once a month, and a wonderful coordinator once a week.  My daughter has made some great progress these last few weeks with her sensory disorders (remember this is her ONLY downfall and even still it’s so mild tht she didn’t qualify for services until they evaluated her on a GD day ). She’s lost her fear of new surfaces / touches, Swinging with feet off the ground, more independent - instead of sitting on the sidelines, crashes into things more - because she’s lost the fear of deep pressure, …. The list just keeps going. Is there an end in sight?

Thanks to all who have posted and gotten in touch with me. There have been over a thousand views from new visitors in the past 10 months!! We’re not alone in this. Please talk to me and each other. Feel free to use the forum that’s why it’s there as a back and forth between all place to talk.

Posted: June 25th, 2008 under Uncategorized.
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So

Posted: June 21st, 2008 under Uncategorized.
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So, we’ve all been very sick here on our end - the Flu. Intially when the systoms started for my daughter I saw some GD. AS I expected to see more for she’d need more soothing. But I wasn’t ready for this … SHE HAS STOPPED!!!! Thursday while I was at the dr’s she was in the waiting room with her grandmother. Without any GD she looked up at her and said “I go big poopy in my diaper.” She wasn’t kidding either!! THIS WAS HUGE … She moved her bowels + in her diaper + w/o any GD !!!!!!! I was shocked to say the least.

Then as the illness progressed on she moved her bowels - in her diapers - THREE more times w/o GD. Can you believe this. She just said “mommy I go big poopies

Posted: June 21st, 2008 under Uncategorized.
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Things have gotten very crazy here for us - life getting busy with these beautifully snny days I mean. But I have been reading all the post and still are in touch with other parents. We are still working with the OT and have made AWESOME progress. As soon as I get a free moment to really respond and go into detail with everyone I will.

But please for those of you who are reading / responding please continue to do so. I am here and it is a great comfort to read your posts.

I’ll be in touch soon Thanks for Read more »

Posted: June 21st, 2008 under Uncategorized.
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Well … Yes, we’re back to the begginning. However, this time we understand it all a little better. The reason why we came back to square one was because somehow we let the ball drop on her bowel movements. She had not gone in six days! Yes that was six days! So of course the GD kicked up to an extreme.

But, Thank God, after two days of bowel movements (five in total) we seem to be back on track!!!! The GD had flared way way up and gotten to a level that brought us back to the begginning but once she moved ALL her bowel we had our little girl back WITHOUT any GD !!!!!!

Now we’re fine tuning all over again. GD has been present on and off for the past couple days but like I keep saying once the bowels are moved the GD dissappears until the next urge comes. She’s back on Miralax and we’re really monitoring her diet. Filling it with just the right amount of fiber and such in hopes of stopping the Miralax completely. The occupational therapist, case coordinator and nutrionist that have been working with us are all brain storming with my husband and I trying to figure out how we went from one extreme to the next so quickly.

The good news is that we’ve had some GD free days here since the last post and so there’s still hope that she’ll be able to continue on and enjoy her days uncontrolled by GD!!!

Posted: April 7th, 2008 under Good Days.
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YES - That’s right SIX full weeks without GD. Not one second here or there. Trust me I kept looking for it everywhere. Around every corner, every quite moment, I opened her door while napping / sleeping just to peek, NEVER did I see it. What a wonderful six week stretch it HAD been!! Every meal was eaten and every car ride was enjoyed. Shopping trips - OMG - stress free. Nobody looked at her diferently. Only the ones who are reading this site would be able to fully understand how wonderful these past weeks were.

THEN … My mother, daughter’s and I were heading out for a shopping day and at the very first stop - there it was. Only for a brief moment but none the less - there. We crossed our fingers and headed on our way - nothing for hours!!! Then towards the end of the day - BAM - there it was. Right back to sqaure one when it was out of control and controlling her every minute. I’m speechless !!!!!!!!!!!!

Though I know it must be hard for some to understand but for her this is DEFINITELY revolving around her bowels. NO - I’m not in some kind of denial. I fully accept this Dx and understand all that I’ve read. But nowhere in ANYTHING that I’ve read has anyone mentioned this condition to the severity that my daughter gets it.

NO !!!! Distraction doesn’t work and it sure as hell doesn’t look remotely close to enjoyable. Take tonight for example ( only because it’s the latest - though know that every second since it resurfaced GD has been present ) here was my daughter at her aunt’s house w/ her most favorite person in the world - her ‘cuz - with freshly baked chocolate chip cookies, motorized ride on toys, new toys / environment … well you get the pic and where was she you ask? … on the cold hardwood floor !!!!!!!! at our feet in the dining room for hours!!!!!!!!  Please what two year old in their right mind would ignore all that for none stop GD - for hours!!

Here’s how I know it’s connected to her bowels. NOBODY knows a child better than their primary care taker - NOBODY!!  I’m with her every second of every day. Let me tell you she has not had a descent bowel movement in DAYS. Yep that’s right the GD came back the second she became constipated. We’re right back to pumping her full of fiber and mirlax. After each BM no matter how small you can see the relief in her beautiful eyes and the GD stops until the next one when she’ll say “my poopies are coming”.  I’m telling you this is the connection FOR HER!!  When this fear ( she’ll scream bloody murder on the toliet while going)/ constipation builds up the GD is present with a vengenace. When the BM’s are all done GD is GONE !!!!

Presently … oh boy!!!! We’re right back to suare one. These past couple days have been horrible. NONE stop GD, no BM’s and one very unhappy little girl and a disheartened mommy. Not defeated just down. The therapists are just as in shock as I am. So, we’ve all gone back to the very beginning steps of her therapy. We had made such huge progress with the listening program and diet alone. Her bm’s were regular and the GD was gone… Just when we thought we had it under control.

Again, I know there is connection here. May not be true for all - quessing the one’s who find it easy to distract their child and find that GD doesn’t control  their tiny body. For me and surprisingly many others - we find GD controling and can’t stand to watch it torture our children.

I have taught her that her bedroom is the place to do it. It can’t be done in  front of others and she knows this. She has gotten very good at “hiding” to do GD. But ALWAYS she’ll have to move her bowels - the more severe the GD the closer the BM. So here I go round one all over again ….

Posted: April 1st, 2008 under Uncategorized.
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O.k. so are you ready for this … ABSOLUTELY NO GRATIFICATION DISORDER FOR AN ENTIRE WEEK !!!!!!!!! I mean nothing - nada - zip. It’s like she just woke and said nope don’t this anymore. And “NO” I don’t think it’s because she has outgrown this. I really feel in my heart of hearts that she’s mastered moving her bowels and has just discovered that it’s not as bad as she had thought.

We’ve all been very sick ( the FLU ) here and yes in the beginning of her symptoms she did have some GD - soothing her. But on Thurs my mother took me to the Dr. and stayed in the waiting room with her and apparently she just W/O GD  turned to her and said “I go big poopy.” and sure enough when I came out she had one heck of a dirty diaper. But that was it no GD leading up to the event and none after. Not even at bed time / naps / car rides it’s no where to be found thank God. AND she’s gone in her diaper three more times just like - she’ll look at me and say “I goin poopies now.” and then that’s it !!!!!!!!!!

We haven’t even had to use Miralax all week. Mostly because we’ve been so sick that she hasn’t needed it but none the less it hasn’t been used. SO OMG !!!!!!!!!!!!  Even if this is all due to end (fingers crossed hoping not ever) it’s has been WONDERFUL to not see GD for an entire week not just a day A WEEK. It’s a mini GD vacation. Hopefully it’ll continue and her GD has run it’s course.

I really feel that if we hadn’t found her Tactile Sensory / bowel movement “fear” this wouldn’t be the post that it is. I think this is all thanks to a lot of hard work, trying things out and narrowing down a lot of things to get her to this point. Without all this she’d still be doing it none stop I’m sure.

Oh please God let this be the end for her !!!

Posted: February 20th, 2008 under Good Days.
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This post is actually way over due but here it is none the less …  My daughter had a wonderful break through - if one would call it that. She woke a week ago and played, ate, conversed, etc. all the normal things a little girl her age should be doing. Then out of the blue (WITHOUT ANY GD) she came up to me and said “Mommy, I have to go poopy on the potty.” Usually once I say “o.k. let’s go” she’ll start crying and screaming saying “no, no, mommy.” This time she walked by herself, as calm as can be, into the bathroom and started getting ready to go!!!!! Still in disbelief over what was happening I followed and helped her. AGAIN NO FIT AT ALL - remember usaully she’ll start screamin / crying afraid to go. Then she says “mommy, I feel the poopy comin’.” Also something we’ve been working on. Explaining the feeling / sensation as related to her  Tactile Sensory Defensiveness.

Then like she’s been doing it all along she just pushed them out, stood up said “yeah, I go poopy. Let’s make them go bye, bye!!” And that was that - NO GD AT ALL - ALL DAY!!!!! Remember when she needs to move her bowels the GD is out of control and the more she has to move her bowels the worse the GD gets.

I was so speechless!!! I never thought this would be the milestone that would make me the happiest. At 24 months old she’s speaking 10 word sentence’s with words like - actually, counting correctly and singing her alphabet along with many other things. But the greatest accomplishment for her was doing this all by herself, without GD, without screaming in fear. She was just 100% normal about the whole bowel movement.

Has there been GD since - YES!! But you know what … This was a little peak at the light at the end of this dark tunnel. This shows that as far as she’s concerned this IS helping her to control / overcome this. She will overcome this and we can all see it now. Will it be soon (I pray) probably not but at least all this work on our end isn’t in vain.

Keeping my fingers crossed for many, many more days like this one!!!

Posted: February 4th, 2008 under Good Days.
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