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Parents of Constipated/Bowel issues kids tribe - Page 8

post #141 of 231
First trip to ped gi tomorrow, wish us luck!
My dd has really taken a turn for the worse in the last three weeks since I went to our family practice doc to get the referral. This has gone beyond constipation and she is now having definite malabsorption issues. I am honestly suspecting celiacs.
post #142 of 231
Good luck..

Hope you have more luck with the ped GI that we did.

I think that we are just going to end up going back to our gp... at least he agreed that we want to figure out what is going on. The gi docs, just want to put him on laxitives, and while that does make DS feel better, it doesn't give us the answer as to why this is happening in the first place.
post #143 of 231
Thread Starter 
:

Yep, thats me. We have Spinal Defects Clinic on Wednesday and I can't wait. Hubby is going with us! : So I can stop listening is complaining about me not asking the right questions. Now he can see what its like.

:
post #144 of 231
Just an aside - I wish our hospital also called it spinal defects clinic instead of Spina Bifida clinic. How much better if people who are supposed to know better would acknowledge that not all spinal defects are SB. But then, maybe I just be happy that at least they no longer call it the Hospital for Crippled Children (which is still on some of the older signs.)

On a happier note, we're not dealing with celiac disease, but still struggling to determine the cause of the malabsorbtion. It make take years, but we'll figure it out.
post #145 of 231
The testing for Celiacs is notoriously poor, because the only really good lab doesn't accept insurance. The nurse told me this, not the Dr, and not very accurate when a child is under 5 especially if they are still nursing.
The Dr at our childrens hosp pretty much dumped us off, the 2 nurse practioners recomended that we have DS retested for Celiacs in a year or two, and they want us to look at a behavioral specialist, and even gave us a reference... in regards to his withholding.
post #146 of 231
Well, our appointment went well. The doctor was supportive of my concerns.
He ordered
Blood work: CBC, RAST for top 5, Celiac panel
Stool test: Parasites, WBC, and fat
Barium enema

I spent quite a bit of time on celiac.com reading about celiacs and it fits my dd to a T. What led me to that was seeing a picture of the rash associated with celiacs when I was researching a different issue. My dh has had a rash that looks exactly like dermititis herpetiformis (sp?) on and off for the last 6-8months. Of course, it is gone right now so I can't make him go get a biopsy on it. He also had quite a few symptoms of celiacs as a child like short stature, unexplained seizures, lactose intolerance. His father was adopted so we don't know any medical history for that part of his family. I am not placing all bets on the bloodwork, by any means. I would prefer to have a diagnosis, as I think that just makes life easier in "proving" that she really can't have gluten, but if we don't get it, we will still be cutting gluten for a trial. I have to try it. We have nothing to lose and everything to gain. She lost a lb in the last 2 weeks, and while that is not desperate, I probably lost 4 or 5 lbs because she is nursing so much. Anyway, I will certainly be anxious for answers that I pray I will have, at least some guidance in some direction.
post #147 of 231
Well, we haven't had a poo since Saturday now. I can't just sneak the suppositories in, she's on to me. Every diaper change she says, 'just wipe please.' She has also asked me not to hurt her baby sister's bottom.

Last night I told her she had to have the soppository and she just screamed and screamed but let me put it in. But even with that and the lactulose she is still not pooping. She's been eating normally so what is going on? Can her bowel have been damaged?

We don't have a pediatrician here yet so I suppose it'll be another trip to urgent care tomorrow. I just don't know what to do anymore.
post #148 of 231
Quote:
Originally Posted by alfabetsoup View Post
Well, we haven't had a poo since Saturday now. I can't just sneak the suppositories in, she's on to me. Every diaper change she says, 'just wipe please.' She has also asked me not to hurt her baby sister's bottom.

Last night I told her she had to have the soppository and she just screamed and screamed but let me put it in. But even with that and the lactulose she is still not pooping. She's been eating normally so what is going on? Can her bowel have been damaged?

We don't have a pediatrician here yet so I suppose it'll be another trip to urgent care tomorrow. I just don't know what to do anymore.

Not pooping even with the suppository? yikes My DS didn't poop immediately, it took like 3 hours. It is amazing how much their bowels can hold when stretched out, our Dr gave me an actual laxative to give ds 2x a week, to make sure things are moving along.
post #149 of 231
Quote:
Originally Posted by alfabetsoup View Post
Well, we haven't had a poo since Saturday now. I can't just sneak the suppositories in, she's on to me. Every diaper change she says, 'just wipe please.' She has also asked me not to hurt her baby sister's bottom.

Last night I told her she had to have the soppository and she just screamed and screamed but let me put it in. But even with that and the lactulose she is still not pooping. She's been eating normally so what is going on? Can her bowel have been damaged?

We don't have a pediatrician here yet so I suppose it'll be another trip to urgent care tomorrow. I just don't know what to do anymore.
Yes, it can take a while but if it doesn't work itself out by the end of the day I would give a liquid glycerin BabyLax.
post #150 of 231
Thread Starter 

Spinal Defects Clinic Update

Its been a long day and I am wiped out.

Anyway, I posted a seperate thread on Gabrielle's leg length disprency. Yikes, its nearly an inch difference.

She did have a plate x-ray of her belly. Guess what? she is still considered moderately constipated. So the plan is to cut out the Miralax and work strictly with eating fiber/water and cone enemas. Then over the next couple of weeks we will see if that changes the stuff we are getting out of her. We may or may not have another x-ray the end of January. We are going to be in KC at KU and could easily run over to Children's and have it done. But we (us and the clinic) are trying to avoid another x-ray so soon.

If this doesn't work, I am not sure what the hell we are going to do. You guys we are still in the clean out stage! Its been months (I will have to figure out when we started with the glycerine enemas).
post #151 of 231
Well, she finally did a big one today, so big it wouldn't flush

We talked about how she has medicine now so that it won't hurt to poop (she loves meds of any kind) and she said that it didn't hurt but who knows what she really thinks. It's so ingrained in her to hold it in, I just don't think a month of lactulose is going to change the habits of a lifetime.

Thanks for all your comments and advice, it helps to know we're not the only ones dealing with this.
post #152 of 231
Quote:
Originally Posted by KatWrangler View Post

She did have a plate x-ray of her belly. Guess what? she is still considered moderately constipated.

If this doesn't work, I am not sure what the hell we are going to do. You guys we are still in the clean out stage! Its been months (I will have to figure out when we started with the glycerine enemas).

She's on Ditropan right? What dose? Have you guys considered just stopping the ditropan for 2-3 days just to give you a little more help to get her cleaned out? I know with Charlotte if I forget to give her the Ditropan or she's just off it for a day she goes a lot more.
post #153 of 231
Thread Starter 
Quote:
Originally Posted by chann96 View Post
She's on Ditropan right? What dose? Have you guys considered just stopping the ditropan for 2-3 days just to give you a little more help to get her cleaned out? I know with Charlotte if I forget to give her the Ditropan or she's just off it for a day she goes a lot more.
Really? Hmmm thats an interesting thought to try. She is on Ditropan 1 cc 3 x day.
post #154 of 231
It's definitely something to consider since you're having such a hard time getting her cleaned out. It's a known side effect of the Ditropan that it interferes with bowel movements as well. I definitely see a difference. We had a problem with Charlotte's medicine about a year ago so she was off of it for several days and boy did she clear out her system then.

The Ditropan is obviously very important medically so you wouldn't want to discontinue it completely, but maybe just for a few days to help get her cleaned out and start fresh so to speak.
post #155 of 231
Thread Starter 
Lets see how she does over the next couple of days without the Miralax. I know the coordinator will be out next week but back in the next week (I think is what she said).
post #156 of 231
I hope this isn't annoying to post, but I though it might give someone hope. DS had some moderately bad constipation dating from when I had to start supplementing with formula. (He also has low muscle tone.) It was bad enough that he would get so backed up he would vomit, and I had to use suppositories. But he has had a truly amazing turnaround since he became able to pull up and stand well and starting really eating solids (which we are careful with--try to avoid binding foods). I also think the daily regimen of 4 oz apple juice plus flax seed bread we had him on for a while helped regulate things. We have gone from constipation being a major, stressful part of our lives to it not being an issue at all. I post this not to gloat, but because I hope it will give someone who might still have a nonmobile baby some hope.
post #157 of 231
Quote:
Originally Posted by loraxc View Post
I hope it will give someone who might still have a nonmobile baby some hope.
Gives me hope, thanks for sharing!
post #158 of 231
Hey, guys... it's been about a week since I posted, so I thought I'd check in. Pairing the Miralax and Buddy Bears Gentle Lax is definitely helping. She's also taking her daily vitamin - Greens Today Children's Formula - which has probiotics, superfoods, and digestive and fiber blends. By the way, that's super cheap on that site! Looks like I may be ordering them from now on. OH... and we decided to give her an enema a week ago because it had been a week since she had a BM (poor baby) and it's what got things started for us to kind of start fresh with the Miralax/Buddy Bears.

We had a huge surprise yesterday. She announced that she wanted to go potty and wear panties! She has been wearing them ever since, and she actually had a BM at my MIL's house last night on the potty!! We were all yelling and jumping. LOL She was so proud of herself and MIL let her open a present early for it. So I'm praying it continues! She held her poop in the whole day before that and that's not worth potty-training to me. So if I see her continue to do that and refuse to poop on the potty, we'll have to put her back in diapers.

What's going on with everyone else?
post #159 of 231
Thread Starter 
We are hanging in there. No Miralax since our last appointment on the 17th. It seems like we are getting better results with the cone enema. A couple of times is looks like we are getting pieces of plugs out. :

Of course there is no way to tell for sure how we are out without an x-ray.
post #160 of 231
Quote:
Originally Posted by LauraReaux View Post
Hey, guys... it's been about a week since I posted, so I thought I'd check in. Pairing the Miralax and Buddy Bears Gentle Lax is definitely helping. She's also taking her daily vitamin - Greens Today Children's Formula - which has probiotics, superfoods, and digestive and fiber blends. By the way, that's super cheap on that site! Looks like I may be ordering them from now on. OH... and we decided to give her an enema a week ago because it had been a week since she had a BM (poor baby) and it's what got things started for us to kind of start fresh with the Miralax/Buddy Bears.

We had a huge surprise yesterday. She announced that she wanted to go potty and wear panties! She has been wearing them ever since, and she actually had a BM at my MIL's house last night on the potty!! We were all yelling and jumping. LOL She was so proud of herself and MIL let her open a present early for it. So I'm praying it continues! She held her poop in the whole day before that and that's not worth potty-training to me. So if I see her continue to do that and refuse to poop on the potty, we'll have to put her back in diapers.

What's going on with everyone else?
Wow, that's great! Congratulations! :

We are still not doing great here. It seems at least DD is getting the "urge" a little sooner than she was, after just one or 2 days since the last poop, instead of 4+. But she's still not acting on it, or it won't come out, I'm not sure. Even with lots of potty sits. Save for this morning. She had a pee accident, which is a sure sign that poop is making its way and either makes it harder for her to hold the pee or she just doesn't want to pee because she knows poop is coming. So anyway, I put her on the big potty and she sat for quite a while before letting a little out. I'm sure it's not all she had but it's a start. Otherwise I've been giving her the suppositories after 2-3 days when it seems like she can't get it out on her own.
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