ksr5377 Posted July 28, 2015 Share Posted July 28, 2015 My niece has been dealing with this for almost a year with no answers. She's only 5, so getting clear answers from her can be a bit difficult at times. She has constant abdominal pain around her belly button (above and below) that sometimes gets stronger, causing her to cry. When it's really bad she even cries if you touch her sides. When her pain is stronger she tends to be running a low-grade temp, but all cultures and blood work show no infection. She vomits off and on throughout the week. Some days not at all, other days frequently. She has not gained any weight this past year. Her GI put her on 17g of Miralax a day, which is causing her to have 2-3 bowel movements a day. However, in an Xray taken just this past Friday, despite these bowel movements, her colon is full - to the point that you see the shape of the colon perfectly. The GI then wanted my sister to increase her Miralax, but if they do that, there's blood in her stool. Also, this GI doesn't seem to have any ideas other than "increase the stool softener." Tests for Celiac and her thryroid have all come back normal. She also has pelvic kidneys, but THAT specialist said that this wasn't related and referred them to the GI. They are going to another GI for a second opinion in 2 weeks, but my sister begged me to see if anyone has any ideas. This child is NEVER a textbook case, so out of the box thinking is welcomed. Quote Link to comment Share on other sites More sharing options...
greenvneck Posted July 28, 2015 Share Posted July 28, 2015 It sounds remarkably like what my daughter went through before she was diagnosed with Crohn's. Was there a colonoscopy/endoscopy performed? 3 Quote Link to comment Share on other sites More sharing options...
ksr5377 Posted July 28, 2015 Author Share Posted July 28, 2015 No, there's been no colonoscopy or endoscopy. Is that needed for an official Crohn's diagnosis? At her last appointment with this GI (yesterday) my sister was basically begging him to run any other test, but he told her that he really thought doubling the dose of stool softener would work. Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted July 28, 2015 Share Posted July 28, 2015 She needs to get a new GI. Anyone who is that nonchalant about a child's pain and frequent vomiting and blood in the stool is not someone I would trust my kids to. If the stool softeners have not cleared her out, they can do a medical clean out and then treat from there. My oldest had issues with a slow moving bowel leading to encopresis and we had to go through a couple of doctors before we found someone who would listen to all the things that did not work before instead of asking questions for 2 minutes and sending us on our way with some other thing we already did without success. 8 Quote Link to comment Share on other sites More sharing options...
gingersmom Posted July 28, 2015 Share Posted July 28, 2015 Have they tried eliminating dairy? Ruled out irritable bowl? 1 Quote Link to comment Share on other sites More sharing options...
Luckymama Posted July 28, 2015 Share Posted July 28, 2015 That poor baby needs a new GI. Do they live anywhere near a children's hospital? Dd15 had to see a ped GI at the children's hospital for someone to take her symptoms seriously. 5 Quote Link to comment Share on other sites More sharing options...
greenvneck Posted July 28, 2015 Share Posted July 28, 2015 Yes, a colonoscopy is needed to diagnose Crohn's. I am also on the side of getting a new GI. Those are serious symptoms and it sounds like the doctor is not taking it seriously. 2 Quote Link to comment Share on other sites More sharing options...
catz Posted July 28, 2015 Share Posted July 28, 2015 Wow - what a terrible doctor. For real. I would start her on probiotics if nothing else, maybe starting low dose and trying to go up from there. Maybe stir a little ground flax into her yogurt to start. I have IBS and miralax doesn't work for me either. I had a colonoscopy and an upper GI too and do not have crohn's. What's her diet like? Has she had allergy testing. Could also be gluten and/or dairy issues. 2 Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted July 28, 2015 Share Posted July 28, 2015 No, there's been no colonoscopy or endoscopy. Is that needed for an official Crohn's diagnosis?No scope means celiac has not been ruled out either. Have they done a clean out? My dd is currently doing this. 6 capfuls of miralax, and a stool softener. Then she takes 1 capful for a few months, then we back down. 1 Quote Link to comment Share on other sites More sharing options...
rose Posted July 28, 2015 Share Posted July 28, 2015 Does she wet the bed? I ask because there is a strong correlation between bed wetting and constipation (symptomatic and asymptomatic). There's a ped urologist that works with bed wetters and has them do nightly enemas rather than stool softeners because they just work better for clearing constipation (if you're interested - his website is: www.bedwettingandaccidents.com). The problem with constipation is that when you're chronically constipated the colon gets stretched out of shape like a used balloon. It can take months for the correct shape to return. 1 Quote Link to comment Share on other sites More sharing options...
aaplank Posted July 29, 2015 Share Posted July 29, 2015 She definitely needs an endoscopy and possibly a colonoscopy. It's hard to make a diagnosis without one. I'm sorry she's had to suffer at the hands of a dumb doctor. 1 Quote Link to comment Share on other sites More sharing options...
ksr5377 Posted July 30, 2015 Author Share Posted July 30, 2015 Thank you for all the information. My sister has an appointment with a pediatric GI at a larger children's hospital. It's more of a drive than the first one, but she hoping for better answers. They have not done a clean out, which we didn't even know was an option. It's also good to know to not panic at the thought of an endoscopy or colonoscopy. I think the best things though was everyone's strong opinion that the first Dr. was no good. I know my sister is a wonderful advocate for my niece, but I also know that sometimes she second guesses herself and starts to feel like she's just a crazy trouble-making mama when she's really just following her good instincts. It's so difficult to have a child whose health is never a simple 'textbook' case. Quote Link to comment Share on other sites More sharing options...
ksr5377 Posted July 30, 2015 Author Share Posted July 30, 2015 No scope means celiac has not been ruled out either. Have they done a clean out? My dd is currently doing this. 6 capfuls of miralax, and a stool softener. Then she takes 1 capful for a few months, then we back down. Does your dd have a diagnosis for celiac? Quote Link to comment Share on other sites More sharing options...
Random Posted July 30, 2015 Share Posted July 30, 2015 Your sister should read about eosinophilic disorders to see if the symptoms fit. http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/ It's billed as rare, but I don't think so. I'm glad she's seeing a new GI. Poor baby. 1 Quote Link to comment Share on other sites More sharing options...
Classic Mom Posted July 30, 2015 Share Posted July 30, 2015 If she is moderately to severely constipated- full of stool on X-ray, then it is standard to do a clean out. This basically the same as a colonoscopy prep. Typically it includes laxatives and a pitcher of miralax or mag citrate mixed with water or Gatorade. Dr can give you dosages for her weight. Please push for a full work up. Her constipation needs to managed better at a minimum. But, ruling out causes for constipation should be done first. Good luck. This is rough dx to deal with in a young child. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted July 30, 2015 Share Posted July 30, 2015 Does your dd have a diagnosis for celiac? No. She has some problems with lactose and possibly something new popping up. Celiac can ONLY be diagnosed by scope. Quote Link to comment Share on other sites More sharing options...
applethyme Posted July 30, 2015 Share Posted July 30, 2015 She really needs to see a better GI doctor for more testing. Quote Link to comment Share on other sites More sharing options...
rose Posted July 30, 2015 Share Posted July 30, 2015 Some people don't realise this but celiac can lead to constipation rather than the classic diarrhea. Quote Link to comment Share on other sites More sharing options...
Nemom Posted July 30, 2015 Share Posted July 30, 2015 Your sister should read about eosinophilic disorders to see if the symptoms fit. http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/ It's billed as rare, but I don't think so. I'm glad she's seeing a new GI. Poor baby. I have a child with an eosinophilic disorder (EoE) and she is not so typical or easy to dx. She is a patient at the linked hospital. When I read the original post I first thought of celiac or EoE. I would definitely recommend a scope and endoscopy. Also tell your sister to be cautious with the Miralax. I've talked directly with the manufacturer several times and it has never been tested on children let alone tested using an adult dose in kids. There is a small subset of kids who are actually allergic to the main ingredient. ETA: Chronic constipation was one of her main symptoms. We spent years trying to get her cleaned out and normal bowel movements before she was finally dx'd. 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted July 30, 2015 Share Posted July 30, 2015 what is her diet like? does she eat enough fresh (unprocessed) produce? has anyone done an actual nutrient panel for what *her* blood levels actually are? has she ever been tested for candida? as well as improving her nutrition standing, I would add a good probiotic. 2 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.