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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