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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We’ve definitely maintained a level of control here on our end. My daughter’s diet is being monitored by a nutrionist and seems to be regulating her bowel movements quite well. Her Miralax is down to once every other day and a smaller dose too!! This is great. Yes – We still have GD present every day but it seems to be “controlled” sort of speak.

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.  

Posted: January 20th, 2008 under Uncategorized.
Comments: 1

Well there’s not too much for me to say. The holiday rush is over and thing’s are just beginning to calm down. Thanksgiving, like I had said was full of gd as far as my daughter is concerned. And only one x-mas get together GD was present until she moved her bowels and then all was back to normal. We’ve met with the nutritionist and have since modified her diet and lessened the Miralax. She’s now moving her bowels almost daily which seems to be keeping the GD at bay. I really feel that this seems to be the major cause of her GD. I’m not convinced talking with the people I have been in contact with that she’ll actually out grow this. I appreciate all the honesty from everyone. I know it’s difficult to talk about and must be harder still when it’s about you directly. As disheartening as some of it is to hear it’s all wonderfully useful in coping with GD and trying to figure this out a little better. Thank you all so much !! Please continue to keep in touch.

Posted: January 5th, 2008 under Uncategorized.
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Thanksgiving – The entire family was here. All of my daughters most favorite people ( minus her favorite aunt - Nana ) and yet we dealt with GD ALL DAY!!!!!!!! This poor little girl barely interacted with anyone, barely ate (yes!! that includes the wonderful dinner that her father and uncle had made) and as far as I’m concerned didn’t enjoy the day at all. That is not until she moved her bowels. When was that you ask … Literally as the last group of family were walking out of our house. They even came to the bathroom to say good night.

After she was all done (and the holiday had passed) she was back to “normal” and full of life!!!!!!!! She was running around the house laughing and playing. She wanted to do a thousand things with us (mom and dad) and of course by then it was bed time. But it was such a joy to have her like this we kept her up way to late. It was worth every minute!!!!

I can see that many people are reading this site. Whether you’re first time viewers because you just received this diagnosis for your child or perhaps someone who has been dealing with this for a while and are just researching to see if there’s anything new please get in touch with me. There’s no need to worry about discretion or worry that I’ll know who you are. Please I can barely turn my computer on. I’m doing this (blogging) in hopes that I’ll connect with many others and get us all together. Don’t know about you but it feels awfully lonely on my end when 99.9% of the doctors and so on that I’ve spoken with have no idea what I’m talking about and then I end up educating them on GD. Worse still is when we’re out and my daughter is the only child doing this. I can’t stand the looks I get from others. At times I feel like they’re looking down on my daughter for what she is doing. I know they don’t know exactly what it is. But to anyone it’s still an “odd” behavior and you can see the “Wonder what’s wrong with her” look in there eyes.

Other times I feel they’re looking down on me for they way my daughter is. Honestly I could care less what others think!!!!!!!!!! I’m just tired of having to explain everything (those deserving of an explanation) or making up “reasons”. It would be s very very nice to just be able to talk to whole group of people who just get it – for lack of a better term.

So, please I urge you one more time to please consider signing up for the forum. It would be lovely to have a place where we’re all together. Thank you either way for your time and for reading this.

Posted: November 26th, 2007 under Uncategorized.
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So, we’re kind of at a stand still here. Nothing is getting any better or any worse. I still do feel that her bowel movements and her GD are connected. The GD flare ups are on days when she hasn’t  (and needs to) move her bowels. Once she does so the GD almost diminishes or goes away completely.

Either way we still ( crossing fingers ) haven’t had a really bad day in quite a while. We’re like a whole new family here because we’re actually able to enjoy our days and each other instead of having the GD run our days for us!

So, the end result for now is that we’re continuing the daily dose of Miralax (laxative - as prescribed by the Ped. GI Dr. Yes, it’s now an OTC drug). One of the wonderful women working with me has recommended a nutrionalist to see if we can’t get her bowel movements to be diet controlled. We’re waiting on a first  appointment. I’ll post with what she/he has to say.

Posted: November 16th, 2007 under Uncategorized.
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Since the visit with her GI Dr. my daughter has been given a daily dose of Miralax (OTC laxative) to “help” her move her bowels. IT’S WORKING!!! Not that I want to jinx all the good in any way but her GD flare ups constantly revolve around her needing to move her bowels. Once she does so she goes back to being just Katie!! Yep that’s her name by the way.

So, now when she starts with the GD we tell her either to go to the potty (we’ve started potty training which is going very very well) or to her room to “cross her legs”. She’ll even tell you now that she needs to “cross her legs” in Katie’s room. So she definitely is starting to learn where / when to do this. But if we sit with her for a while on the potty she’ll move her bowels, jump up all excited and then go on her merry way with no more GD until the next movement.

We still do every now and then see a little while she’s sleeping / very sleepy but not like before. Since these daily bowel movements we’ve done all the things we were doing before this started to take over. She wakes in the morning happy and ready to talk / play. Instead of staying in bed for hours on end ( we’d never know when she was up b/c she would just stay in bed to do GD ) and coming out with a head of hair wet with sweat from GD. She eats all her meals!! Plays with everyone everywhere without stopping for GD. And at night time when she would normally start up with the GD we snuggle, color, watch t.v., read books, etc. instead!!

It’s been a wonderful passed few days here on my end. 99.99% of my daily stress was watching her do the GD and not live her life. So, I’d say countless times, many different things to try and get her attention / to stop and nothing ever worked.

Had someone suggested in the beginning ” Hey, did you ever do an Early Intervention Evaluation to see if she has sensory issue’s?” we would’ve been here so much sooner.  This advice to do this came from my mother. She had said right from the beginning ” It sounds like a sensory issue” and my response was always that ”If it’s that simple then why haven’t any of the doctor’s said so?”.

I know that we’re one case. I’m not a doctor! I don’t have a degree in anything related to any of these things regarding GD, child psych or what have you. But I’m a firm believer of nothing beats a failure but a try. And this is the most non-invasive option to explore. If your child is diagnosed with GD and there are no other medical finding’s have them evaluated and see if they have some sensory issues. Then maybe you can work with the sensory and who knows maybe it will in turn help the GD. Maybe for some children there is more to it than just “normal development”. Maybe some children really do do it because of a reason. Maybe Katie’s the only one who seems to have GD / bowel movements connected. Who knows ….

Posted: November 6th, 2007 under Uncategorized.
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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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