GD has controlled my daughter’s life from the time she was 11 months old!! yes, that’s right 11mos. So, in the beginning when GD was at it’s worst she didn’t get to ENJOY all the things that little kids SHOULD be enjoying like EATING for instance – she skipped meals to GD, skipped playtime to GD and so on. It’s not as if she would GD for a short amount of time and then go onto something else. She would GD for HOURS and HOURS without stopping. So YES YES YES I’m overwhelmed with enthusiasm that the GD has calmed down to the point where it’s only when she has a BM or is VERY tired. Because now I’m able to watch her play with her friends and family, laugh, eat, travel, sleep and so on …. It’s a beautiful thing!!!!

As in previous posts it’s not the GD that bothered me. Yes, I understand it’s normal. What I feel ( and remember these are only MY opinions here and I keep saying that) was not normal about her case was the duration of GD throughout the day and the severe impact it had on her daily life!!! NO! As a parent to me that was not O.K. or normal !!!!  So, understandably I’m happy that it’s calmed.

This has been the best summer we’ve had in three and a half years. She is able to enjoy ALL that summer has to offer and when she feels the need to GD she’s able to put herself in her bed and do so. She is not punished for it, thought less of or made to think that this is not normal and something she should be ashamed of. Instead she is showered with love EVERY day and made to feel like the princess she is and will always be !!!

And please remember that this is a personal blog site. I’m putting myself out there so that others on the edge feeling all alone in this can know that they’re not. There’s strength in numbers and with that comes comfort and possibly some solutions!! I have only given my experience’s and my thoughts if you don’t like them or agree with them why waste my time and yours by making pointless comments. My time is reserved for those of you who need someone to talk to and those who take this site seriously.  For those people (hundreds now and 60 of which I still need to get in touch with)  I WILL write you all individually!!! Sorry life has gotten crazy busy but I will connect wit you. And please continue to write your comments I appreciate them very much !!!!

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 !!!!!!!

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.

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

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 your time

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 ….

I’m in contact with another mother who is having her daughter evaluated for sensory disorder’s. She asked me if I felt this plays a part in my daughter’s GD behavior. My answer  – YES!!!! There is no doubt in my mind that this is all somehow connected. Before she was evaluated and found to have Tactile Defensiveness ( the ONLY thing found – no delays / other disorders or other diagnosis – just this!! ) we had horrible days that would leave me in tears and beyond frustrated!! Now with the help of some VERY wonderful people who are working with my daughter we haven’t had a worse day since!!!! To my daughter they’re simply playing but they’re really looking for certain things and working on those areas as playtime.

They leave us with instructions to allow us to continue with their work – which is all simple things to follow i.e. forms of play, textured items, things to look for. It’s all explained fully and they’re always available for question’s and always thinking of new things to try.

Granted the GD is all new to them and we’re all working on this together but it’s together that we’re helping my daughter live a better life where she can enjoy her days fully instead of the GD taking the day over.

So, yes, I do feel that sensory plays a part in GD. At least for her it has proven to be key in helping her control this behavior.