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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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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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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