Hirschsprung's? - Mothering Forums
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#1 of 36 Old 06-04-2010, 06:45 PM - Thread Starter
 
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My son is 7 and has been constipated pretty much since he was born. I've been asked if he pooped right after birth and honestly I can't remember, but I'm sure if he didn't that the midwives and I would have noticed. I do remember taking him to the pediatrician at 4 months because he was going 3 weeks or more between bowel movements. The pediatrician just said it was physically impossible for breastfed babies to be constipated. He would scream off and on for 24 hours before he went and his whole body would go rigid. He has been on miralax before, but he seemed to be getting better. I haven't really kept track of bowel movements the last few years because he wasn't complaining.

A few months ago he started peeing a lot. His pede was out of town and one of the other dr's ordered a glucose test. It was normal. I took him in to talk to his pede and she said she was positive he had a urethral stricture. It's a long story, but it took almost 2 months to get him into a specialist. The peeing started around 6 weeks before. WHo knows how long before we actually noticed.Three weeks ago we saw his pede and I told her he was peeing less often, she said his stricture was getting tighter. Two weeks ago he tried to pee and it took three tries before he was able to get anything out. So she had us drive 3 hours to the Children's hospital ER. The did an x-ray and said he had an almost impacted colon. He was peeing by the time we got there, so they refused to let us even speak to the urologist. They sent us home with a heavy duty miralax regimen.

We finally saw the pediatric general surgeon yesterday. He was so wonderful. He actually listened to us. I explained everything to him. THe peeing, the er visit, constipation since he was a tiny baby. I said someone had suggested Hirschsprung's and he said that was exactly what he was thinking. He asked us a bunch more questions and kept shaking his head saying ds should have been tested years ago.

Mon ds has a barium enema and the following mon he has the stricture surgery and a rectal biopsy.

Does anyone else deal with this?

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#2 of 36 Old 06-04-2010, 10:47 PM
 
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I have no personal experience with Hirschprung's, just couldn't read without posting some support. It sounds like at last you'll be getting some much needed answers.

Mama to my spirited J, and L, my homebirth: baby especially DTaP, MMR (family vax injuries)
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#3 of 36 Old 06-05-2010, 02:06 AM
 
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I don't have any experience with Hirschsprung's, but I do have Ulcerative Colitis and IBS (not a good combo.) I have also had several surgeries unrelated to that condition. The pain from the surgeries was much easier to cope with than having an obstructed bowel and ulcers at the same time. If fact it redefined pain for me. From what you described it sounds like your son went through some extreme pain also. He probably has a very high pain threshold by now.

Have you considered cross posting to probably the parenting forum for ideas on how to mentally prepare everyone for the upcoming surgery? Is this the kind of thing that has recurrences? If so that would be something else he would need to know about.

I'm happy to hear you have found a good doctor. I hope all works out well.
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#4 of 36 Old 06-06-2010, 02:43 PM
 
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My son is almost 3 and has been constipated since he was a tiny infant. Our doc also gave us the breastfed constipation go-round. They just said to give him pear juice.

We just had the biopsy to check for hirschprung's last week, and my son does not have hirschprung's. He has also had a barium enema.

The only thing we know for sure is that he has some food intolerances. He's been dairy and soy free since he was 1 year old. That has helped, but not cured anything. He is on a high dose of miralax, and will be going to a Bowel Management Clinic in September.

If you have any questions about the tests your son will have, I would be happy to talk with you in detail.
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#5 of 36 Old 06-06-2010, 02:56 PM
 
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Hey there,

We are dealing with similar issues, and just had a flex-sig biopsy done on Thursday to check, again, for Hirschprung's disease. We've had this test previously, and the area tested showed no abnormal nerves, and so the doc gave her a year to try to outgrow it. She hasn't. Our regimen is an enema at least once a week, and then adult-dosage miralax every day (which is pretty easy for us since she's tube-fed). She still doesn't evacuate enough.

So, no answers from here, but I do know what you're going through.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#6 of 36 Old 06-06-2010, 03:15 PM - Thread Starter
 
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I did some reading and found out we may not be able to be with ds when they do the barium enema. Is this the experience you had?

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#7 of 36 Old 06-06-2010, 10:04 PM
 
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I was with my son for the barium enema. In fact, it was encouraged, because the child needs to lie still and be calm. My son has had plenty of enemas, and was very upset (you can't reason with 2 year olds), but they were still able to do the test. However, we were told that if we couldn't keep him still, they could reschedule and do it with some calming medicine like Versed.

The test was over fairly quickly. As far as testing goes, this was not the worst test for him at all.

AndVeeGee- I was curious about that too- how they could no for sure that it's not Hirschprung's from just one biopsy sample. It's my impression that it can be just one segment, so what if they don't biopsy that exact segment? No mention was made to us that it wasn't a difinitive negative, though.
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#8 of 36 Old 06-06-2010, 11:54 PM
 
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My story...
Both my kids were exclusively bfed until one year.
My daughter started getting constipated (mildly) after starting solids, but nothing big until 2.5yrs--my mom had me convinced that she needed extra dairy if I wasn't nursing her as much ...so she would add nonfat milk powder into her oatmeal. (we were staying with my folks while my dh was deployed)
Around this time she started having a hard time pooping...in fact, she got a hernia and ended up with surgery. I had been trying glycerin suppositories and enemas--not knowing she had anal fissures which makes the suppositories and enemas extremely painful...it was HORRIBLE. (for her more than me, but for me as a mama watching my baby give BIRTH to these poops...awful!)
So...after the hernia surgery, we were on Miralax...around age 4 she was weaned off...and now at almost 8 only occasionally has constipation...I will say that sometimes when she poops it is truly amazing...GIANT poop...more than I think my body can handle...my husband is even impressed.
My son...poor little guy...has this constipation thing even worse...but we got him on Miralax earlier--BEFORE a hernia.
He was around 6mo old when he stopped pooping. Before that time he was a normal breastfed-poop baby. I think it has something to do with his digestive system changing around 6 mo...but I didnt' give any solids, so it was weird. Just bm...and he would go 2 wks or so without pooping--didn't bother me...he was a breastfed baby! But then 2wks turned into 3, and then into 4...we tried massage, chiropractor, reg ped, specialists...nothing worked. ONce he turned 1 I did give solids....even tho I was worried it would get worse. It was at this time that we did start Miralax. We've weaned him down a couple times with some success...but I can't let him go longer than 3 days of no pooping before I feel I need to give him Miralax. I just can't let him go thru that constipation.
Specialist checked for thyroid and did discuss HSprungs--but felt strongly that he didn't have it since he HAD pooped without a problem for the first 6mo of life. Course then I found out about short segment HSprungs or ultra-short segment HSprungs...and it sounded like it fit my child even more. BUT, I haven't been back to see the Specialist yet about it. Honestly, I'm kinda hoping he outgrows it like his sister did...but...not sure yet if that will happen.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1345392/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1544747/

Just today I gave him a full dose of Miralax (his third day in a row of full on Miralax and no poop). Tonight he pooped...it was about 6 inches long and hard and he was definitely acting like he was giving birth. His legs shook...he was scared and told me it was hurting etc. When I took off his diaper he was able to push it the rest of the way out--but it had been stuck 1/2 way because his diaper was impeding it's path. There was a drop of blood--but not much in comparison to my daughter--so I don't think there are any big fissures/tears. He pooped a 2nd time--mud like...so I am feeling like most of it is out.
The oddest thing is that when he DOES poop, it is usually not much. Brings me back to the times he would not go for WEEKS...then when he did go it still wasn't like a blow out. Odd.
Ok...so I know I should take him back to the Specialist...but honestly, I didn't think she did any good really...and I have a severe distrust of Drs in the first place...
Anyone know of a good specialist in Ohio?!?

Sorry if this sounds scattered...I'm only 1/2 awake...
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#9 of 36 Old 06-06-2010, 11:56 PM
 
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Lastly...if I do take him back (remember my past Specialist seemed to think it was a-ok to have him on Miralax for YEARS until he outgrows the need...) what will they try first? Barium enema?
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#10 of 36 Old 06-07-2010, 12:56 AM - Thread Starter
 
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I hope they let us go back with him. We were supposed to give him a half a dulcolax tonight, but he doesn't do pills, so they said we could give him a dulcolax suppository. That was so much fun (eyeroll). He cried. He asked why this has to happen to him, why he has to have this, and have all these tests. I feel so bad for him. He started peeing all the time so we were sent for diabetes testing. His fasting finger stick was just over normal, so we had to do a 3 hour glucose test. A few other blood draws a few times. Some places where they took several sticks to get anything, sometimes nothing. Then the dr figured out he had a urethral stricture and we ended up in the er for a catheter. He's had a lot in the last few months. I hate it for him.

Mrs Hos, I would try a different specialist, but I don't know what they would try first. I'm all new to this.

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#11 of 36 Old 06-07-2010, 01:14 AM
 
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Originally Posted by Mrs_Hos View Post
Lastly...if I do take him back (remember my past Specialist seemed to think it was a-ok to have him on Miralax for YEARS until he outgrows the need...) what will they try first? Barium enema?
If your child has constipation issues one of the worse things you can do is suddenly stop a laxative. Yes, it can take a long time to retrain the bowels. But you wean him off slowly over a long period of time.
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#12 of 36 Old 06-07-2010, 02:48 PM
 
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AndVeeGee- I was curious about that too- how they could no for sure that it's not Hirschprung's from just one biopsy sample. It's my impression that it can be just one segment, so what if they don't biopsy that exact segment? No mention was made to us that it wasn't a difinitive negative, though.
Yeah, they told us at the time that it was not definitively negative and that we would likely have to re-do the testing. They did take several samples at the time. But, because she generally has low muscle tone that has slowly improved, we wanted to take the treatment path slowly as well, hoping she might outgrow this as she continued to potty train and, hopefully, eat solid foods. Since the former happened and the latter seems like it will never happen, and since she hasn't gained any weight in about 7 months + can't have any more volume of food without exploding, in part because she is always full of poop, we are looking into it again. Frankly, I'm at the point where I want to ask for a MACE, just so we can get more food into her. DH isn't there yet, but he also doesn't do the enemas for her. We should have biopsy results on Wednesday (though I'll be surprised if we actually hear on Wednesday, or any day soon after!).

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#13 of 36 Old 06-08-2010, 06:00 PM
 
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I got a very terse e-mail from the nurse saying all samples were normal. Again.


So, no answers. Still.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#14 of 36 Old 06-08-2010, 06:35 PM - Thread Starter
 
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That's what I'm afraid of! I told my dh that, bad as it sounds, I'm kinda hoping for a Hirschsprung's diagnoses. At least then we will know what is going on and what needs to be done to fix it. Otherwise we are right back where we started, at least we have a great dr, that listens to us now.

We did the contrast enema yesterday. It wasn't barium, but gastrograffen. THey let us both be in there with ds. Dh sat with him and I was behind the lead glass, but I had my own little screen to watch it on. He did really well. Right before he started crying asking why he has to have this thing wrong with him and all these tests. It broke my heart.

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#15 of 36 Old 06-08-2010, 08:33 PM
 
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I know what you mean. When I get the enema prep out, VeeGee begs, "Please don't hurt me!"

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#16 of 36 Old 06-08-2010, 09:51 PM
 
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Wendy, we waited almost a year and a half before doing an appendicostomy and I wish we had done it so much sooner. It has been wonderful. I love not having to give enemas anymore. I just sit him up on the potty, hook up his tube, hang a bag of saline, and let it rip. No more inpatient clean outs, no more holding down for enemas, no more milk and molasses. It's wonderful. And it's really not a bad surgery at all. Neblett did L's and I'd totally recommend him if you guys go with it. Absolutely fantastic, I'm so glad we finally did it. It's just a HUGE quality of life thing.
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#17 of 36 Old 06-09-2010, 03:01 PM
 
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I'm glad you were able to be there for the test. I hear ya about it breaking your heart. "Mommy, why you do that to my tushie?" should not have to be said by a toddler. He also asked me while I was changing batteries in a toy if I was going to put it (the battery) in his tushie.

I also understand wanting an answer. It's so hard to not know how to help your kid. I kinda wished for Hirshprung's too, even though I'm really glad he doesn't have it. But, even without a name on the reason for the constipation, there are still things to do and try. At least, that's what I keep telling myself.

AndVeeGee- Hopefully you are able to make a peaceful decision about whether to do the MACE or not. Don't you wish there was an instruction manual that could tell us what exactly needs to be done and when. I never realized how much of doctoring was guess work and ruling things out in order to get an answer. Sometimes it feels less like science and more like a science experiment.
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#18 of 36 Old 06-09-2010, 06:22 PM
 
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I think the thing that is motivating me the most in terms of the constipation is that she hasn't gained weight in so so long (and, in fact, lost four pounds and then stabilized). And we can't increase calories because she's just about to pop all the time, and we can't let her retch because of her throat. Ugh. Ugh. Ugh.

We've got throat reconstruction (or, rather, "revision" - for some reason that's really funny to me) on July 1st, so a MACE is probably going to have to wait for a while no matter what. Neblett did her nissen, so we'd definitely go with him again - he's great.

So, we enema . . . and Miralax. I cannot wait until the day I don't have to smell the distinctive nastiness of Miralax poop. :Puke

(sorry to have hijacked, y'all!)

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#19 of 36 Old 06-09-2010, 06:23 PM
 
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AndVeeGee- Hopefully you are able to make a peaceful decision about whether to do the MACE or not. Don't you wish there was an instruction manual that could tell us what exactly needs to be done and when. I never realized how much of doctoring was guess work and ruling things out in order to get an answer. Sometimes it feels less like science and more like a science experiment.

Yes yes yes. But, I'm glad that I kind of already knew that, as I'm a walking auto-immune nightmare myself. I'm used to hypotheses as treatment plans. Don't like it, but I'm used to it. I got over thinking docs were god a long time ago.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#20 of 36 Old 06-21-2010, 10:47 PM - Thread Starter
 
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So no HD. The left side of his colon is already a bit inflamed again. *sigh* Just stay on Miralax a few more weeks, then wean off. If he gets backed up again go back in, but they will likely just do do another grastrograffen enema. double *sigh* I wanted to ask for a sitz mark study and I have no idea what stopped me. I cried after we left. My dh doesn't understand. He thinks I wanted Sam to have surgery, which is horrible. I don't, UNLESS it would help him. I just want to know WHAT IS WRONG!! Why can't it be easy?

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#21 of 36 Old 06-21-2010, 10:56 PM
 
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Oh Mama, I totally totally totally totally understand how you're feeling. Oh my god, do I. I'm so sorry that there are just no freakin answers. Like you, I would say heck yeah to surgery if it would help her, and DH feels like yours does. And THAT makes me feel really alone, in a sense.

Don't get me wrong, he's awesome, and he doesn't want to see our little one suffer "extra."


Is there some reason you can't still ask for the Sitzmark?


So many hugs to you! Hang in there.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#22 of 36 Old 06-22-2010, 12:08 AM - Thread Starter
 
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Is there some reason you can't still ask for the Sitzmark?


I don't know. The surgeon is an hour away. The pediatrician sucks, but I was told about another pediatrician that my friend goes to and she swears he will really listen. Someone suggested celiac disease and not everything fits, but it looks like a few things could. It's all so confusing. Dh and I talked about maybe trying a gluten free diet, but then I read that if you are going to get a test that you really need to be eating what you normally eat. It looks like first you can do a simple blood test. Why do they have to be such hard decisions?

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#23 of 36 Old 06-22-2010, 09:39 AM
 
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We don't have answers either. It is sucky, but constipation is a problem for lots of kids (so say my nurse friends). I also have friends whose kids were on Miralax for 10+ years. I know it's not fun to be on medicine that long, and there are really scary stories about Miralax online, but unless you can get the constipation under control some other way, it is necessary. My son won't eat when he's backed up, and I assume most kids are like that as well.

I would definately try altering his diet. (I am for my son, we will be going gluten free as soon as I go get the ingredients for some recipes. We are already dairy and soy free.) The test for celiac is very unreliable unless you do the biopsy (or is it a scope?). Constipation is a symptom of food allergies. The food allergies forum has lots of information (it is overwhelming, though, because some of those ladies have read a TON). I am debating going to an allergist, but am really sick of doctors. I think just taking out wheat would be less disturbing for my son.

I also wish we could just have an answer, but it doesn't always work that way.
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#24 of 36 Old 06-27-2010, 01:17 AM
 
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Our daughter was also horribly constipated as an EBF'd baby, basically since birth. She was tested for Hirscsprungs, but also negative. Once we started solids, she was on fibre supplements, stool softeners and a high-fibre diet to no avail. In the end, it's quite likely coeliacs disease. Removing gluten from her diet cleared up the constipation entirely.

She wasn't tested before removing gluten from her diet because nobody thought it was likely (she's not "typical" coeliac)- but, for us, it was a clear difference in her behaviour, her bowel motions and just about everything else within weeks of removing gluten.

I hope you all get some answers, ASAP. It's awful to watch your LO suffer and not know why.
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#25 of 36 Old 06-28-2010, 09:43 PM - Thread Starter
 
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I switched to a new ped today. I didn't know where was one in my small town. She's new to one of the clinics here. I saw her and explained Sam's whole history. I asked for a Celiac blood panel and she agreed that was a good idea. He hates them and it can be a fight, but it's way less invasive than a biopsy. I didn't know if she would diagnose him at Celiac without some sort of test and for some things (school, camps, etc) a diagnosis is important. SHe did tell me that the responding favorably to the diet helps make a diagnosis, so we're all going gluten free tomorrow. She also did another x-ray, surprise surprise, he's already constipated. She's sending us to the GI's at the Children's hospital. She was so nice and I love how she listened. I signed papers to have all my kids records transferred. She said she would call me with the results. She said she would have them by Friday, but said that was a big overestimation. She said that I couldn't bother her with phone calls, meaning, it would be impossible for me to bother her. I'm so glad I called her office this morning.

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#26 of 36 Old 07-02-2010, 12:13 PM - Thread Starter
 
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Blood test was negative. I feel so discouraged. I know there is something wrong, but I don't know what to do any more.

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#27 of 36 Old 07-02-2010, 05:51 PM
 
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I'm so sorry. I really understand how you're feeling. I hope you get some answers soon. Or, even better, I hope ds's condition improves like crazy.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#28 of 36 Old 07-02-2010, 06:03 PM - Thread Starter
 
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The Miralax is now giving him diarrhea, so we're to change the dose and call the ped back on Tues. Part of me just wants to quit. Part of me wants to keep looking. Just a blood test is a kicking screaming fight. I feel like crawling in bed and crying. At what point do I just give up?

Serenity LDS mommy to 4 rambunctious kidlets
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#29 of 36 Old 07-02-2010, 06:59 PM
 
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We've never found a happy medium with Miralax, meaning, it's all or nothing. Diarrhea or Constipation. And it has a particular smell that we call eau de Miralax. I know it's difficult to see this stuff, to deal with it.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#30 of 36 Old 07-16-2010, 12:31 AM - Thread Starter
 
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So it's been two weeks completely gluten free. Sun, Mon, Wed, and TWICE today Sam had spontaneous bowel movements. No more Miralax!!!!!! I honestly don't know if it's Celiac, and I'm not so sure I care anymore. Although, I admit the tax credit with a diagnosis (for our increased grocery bill due to gf) is a lure. Sam is pooping, Noah isn't having mucusy diarrhea or a facial rash, I think Madalyn has stopped having night terrors. It's just mind boggling. I told Sam how excited I was that he could go to the bathroom without medicine and he said "Yeah, but I love gluten* He makes me laugh.

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