I just wanted to let you know that your post has meant MORE to me than you’ll EVER know !! It actually brought me to tears and I had to take a moment to gather myself. Why? Because I’ve found what my daughter has “latched” onto – HORSE’S – I’ve been working non-stop to do EVERYTHING horse’s .. I bring her to my girlfriends for lessons and horse interaction almost every day, I’ve entered her in shows, turned her bedroom into horse’s and recently I bought her her first horse. Everyone thinks I’m crazy because she’s “too young” (4 & 1/2) and I’m ’spoiling’ her … However, the first time she went up on a horse it was as if someone had turned an “on switch” with her and she BEAMED with PURE happiness and confidence. I had told my husband that day I didn’t care what it took but I’d make damn sure that her and horse’s would be a constant. I also noticed that day that her GD wasn’t present .. And lessens more with the time we spend with the horse’s. I’ve been saying for over a YEAR that this was what she needed all along and I was so happy I found it. BUT you were the FIRST and ONLY person to verify that all my hard work was actually doing what I thought it was doing. I can’t even tell you what your post means to me !!!!! I’ve been looking for someone to say “yes – you’re ‘helping’ her” and yes I understand that it’s nothing that needs to be ‘helped’ … I’m sure you understand what I’m trying to say. The hard work was actually doing some good!!!! I understand your need for privacy but I’m writing this in the hopes you’ll read it and know that what you wrote will FOREVER stick with me – THANK YOU !!!!!!!

Posted: July 27th, 2010 under Uncategorized.
Comments: none

who are only reading part of my blogs and then commenting – please read the site entirely before you make your own comments !! Once again to clarify for those of you who aren’t able to read …

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 !!!!

Posted: July 6th, 2009 under Uncategorized.
Comments: none

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.
Comments: none

So

Posted: June 21st, 2008 under Uncategorized.
Comments: none

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.
Comments: none

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.
Comments: none

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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