Severe evening abdominal pain in child, colonoscopy and endoscope clear

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weez
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Date Joined Aug 2017
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   Posted 8/16/2017 7:38 AM (GMT -7)   
My daughter has been dealing with severe abdominal pain for the last 52 days. Pain is predominant in the evening but present 24-7. She is currently seeing a Ped GI Dr. that originally diagnosed her with chronic constipation, after 2 clean outs, and enema & multiple xrays they ordered a upper endoscope and colonoscopy. Both visually cam back clear but biopsies were taken, still waiting for results. I'm looking for anyone who has had similar issues & what your outcome was. At this point I'm grasping at straws & looking for anything to suggest or a possible solution to try.

beave
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Date Joined Mar 2007
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   Posted 8/16/2017 5:31 PM (GMT -7)   
How old is the child?

Is the pain constant? Or just after meals? Shortly after meals or hours after meals?

Where in the abdomen is the pain localized (if it's localized)?

Have any blood tests been done? Blood tests for liver enzymes, pancreatic enzymes, ESR, CRP, in addition to the standard CBC with differential and metabolic panels.

Any IBD in the family? Any other 'autoimmune' type diseases (RA, lupus, MS, psoriasis, etc)?

You mentioned x-rays. What about ct scans? Any done?

73monte
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   Posted 8/16/2017 6:24 PM (GMT -7)   
With a good report on the colonoscopy and endoscopy, then you can likely start to look at other things. Of course you'll have to wait on the biopsies to come back, but if there's no sign of IBD after that, then you might consider further diagnostics. I would consider an MRE. This will give a pretty clear picture of the digestive system. Also, tests for lactose intolerance, and gluten sensitivity should be done. A full scale blood work up as well. I would be looking for infections too.

weez
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Date Joined Aug 2017
Total Posts : 6
   Posted 8/17/2017 6:30 AM (GMT -7)   
beave said...
How old is the child?

Is the pain constant? Or just after meals? Shortly after meals or hours after meals?

Where in the abdomen is the pain localized (if it's localized)?

Have any blood tests been done? Blood tests for liver enzymes, pancreatic enzymes, ESR, CRP, in addition to the standard CBC with differential and metabolic panels.

Any IBD in the family? Any other 'autoimmune' type diseases (RA, lupus, MS, psoriasis, etc)?

You mentioned x-rays. What about ct scans? Any done?


Response....

She's an 8 yr old very active girl.

Pain is in the AM (moderate), usually about an 1.5 hours after waking (6:30) shes ready to try to eat. Around 10am or so she seems pretty good until around 5-6pm. If I ask her how shes feeling 10-5 she says "kinda good, but my stomach is woozy"...in describing "woozy" it sounds like nausea. Lunch usually goes pretty good but she stops eating when her stomach starts hurting. In evening, usually during supper it gets severe and stays that way until she falls asleep. It's taking her 1-2 hours to fall asleep & to be perfectly honest it seems like she just wears out. Shes in pain throughout the night (I can hear her grunting & panting in pain) but is sleeping through the night.

She circles from her belly button up to her breast bone when asked where it hurts. Also says at night it feels like shes going to puke but never does, her esophagus and chest area become painful during this time as well.

Blood tests listed have been done as well as a CT & 2 ultrasounds at the beginning of July (they were thinking it was her appendix). Ultrasound showed inflamed lymph nodes in belly & she was diagnosed with mesenteric lymphadenitis on July 1st, in the ER on July 5th (CT confirmed appendix looked good), at a Ped GI July 17th who diagnosed her with chronic constipation, did 2 clean outs, 1 enema (blockage discovered in rectum) & just this week the colonoscopy & endoscope.

Husband/dad has diverticulitis & "IBS", his side of the family has digestive issues. My side has RA, no lupus or MS & distant family has psoriasis.

Any thoughts wait and see? Also, any advice on pain management? Heating pad, peppermint tea & elevation are all being used.

straydog
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   Posted 8/17/2017 8:04 AM (GMT -7)   
weez, my grandson had some real problems with constipation at a young age. His pediatrician recommended Miralax to keep things moving. It is a stool softner not a laxative. You may want to look at her diet to see if there is something contributing to the constipation. I have to wonder if some of the pain is trapped gas too.

It sounds like you are doing the right things to help with the pain. Do you ask her every day how she is feeling, or do you let her come to you & say mommy my tummy hurts?
Susie
Moderator in Chronic Pain & Psoriasis Forums

beave
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   Posted 8/17/2017 2:12 PM (GMT -7)   
Does she have any fevers through all of this?

Do you know what kind of ct scan was done? Was it with oral contrast? IV contrast? No contrast?

Similarly, do you know what kind of ultrasound was done? What exactly did they look at and what did they look for?

And what blood tests have been run and what were the results?

scifigal2k
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Date Joined May 2012
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   Posted 8/17/2017 5:10 PM (GMT -7)   
I just want to say how much my heart aches for you. I know how it is as a mom hearing your child in pain and not being able to do anything about it.

I agree with the suggestions above for a stool softener. Also, what kinds of foods does she eat? One of my first thoughts is to cut out cow's milk - it's the #1 cause of constipation in kids. Has she been tested for food allergies, celiac, gluten intolerance, etc?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

weez
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Date Joined Aug 2017
Total Posts : 6
   Posted 8/18/2017 6:07 AM (GMT -7)   
scifigal2k said...
I just want to say how much my heart aches for you. I know how it is as a mom hearing your child in pain and not being able to do anything about it.

I agree with the suggestions above for a stool softener. Also, what kinds of foods does she eat? One of my first thoughts is to cut out cow's milk - it's the #1 cause of constipation in kids. Has she been tested for food allergies, celiac, gluten intolerance, etc?


We cut out lactose about a month before all this started since shes always had stomach pains, just not even close to this severe. I believe the constipation was a problem but not THE problem. Celiac testing came back neg.

weez
New Member


Date Joined Aug 2017
Total Posts : 6
   Posted 8/18/2017 6:13 AM (GMT -7)   
straydog said...
weez, my grandson had some real problems with constipation at a young age. His pediatrician recommended Miralax to keep things moving. It is a stool softner not a laxative. You may want to look at her diet to see if there is something contributing to the constipation. I have to wonder if some of the pain is trapped gas too.

It sounds like you are doing the right things to help with the pain. Do you ask her every day how she is feeling, or do you let her come to you & say mommy my tummy hurts?


Response...

She is currently on a maintenance regimen of Miralax in the AM and Miralax with exlax in the PM with a 5-10 min sit (on the toilet) after every meal. Constipation was a problem but not THE problem I believe. I don't ask her how shes feeling, me asking all the time would keep it on the top of her mind, she comes to me. Last night she was sleeping hard, shot straight out of bed and bent over in pain....my gut is saying something is NOT right!

weez
New Member


Date Joined Aug 2017
Total Posts : 6
   Posted 8/18/2017 6:21 AM (GMT -7)   
beave said...
Does she have any fevers through all of this?

Do you know what kind of ct scan was done? Was it with oral contrast? IV contrast? No contrast?

Similarly, do you know what kind of ultrasound was done? What exactly did they look at and what did they look for?

And what blood tests have been run and what were the results?


Response....

No fever

CT scan was an IV contrast

Ultrasound was a full abdominal exploratory (both), first found the inflamed belly lymph nodes & normal looking appendix, second thought the appendix was slightly large and didn't "squish" down which is why the
CT was ordered to look at the appendix. They were looking for anything that would cause pain.

She's had the FULL gambit of blood work done multiple times (including liver/pancreas/celiac) a year ago and again within the last month.

straydog
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Date Joined Feb 2003
Total Posts : 15326
   Posted 8/18/2017 7:22 AM (GMT -7)   
Weez, it's awful when the little ones have something going on like this. Reading that she is on both Miralax & Exlax, is she still constipated? How long does the dr say to keep using the Exlax? I don't know how long the Exlax has been in use, but two things I would watch for, is if she starts having loose stools & if the cramping gets worse. Exlax can cause cramping even with adults.

As a kid I had the constipation thing. I was one of those weird little kids that liked prunes. She would give me some prunes every evening straight out of the box. This kept things moving.
Susie
Moderator in Chronic Pain & Psoriasis Forums

scifigal2k
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Date Joined May 2012
Total Posts : 3321
   Posted 8/18/2017 5:26 PM (GMT -7)   
As a mom, definitely go with your gut on this. What is her regular diet like? Usually with constipation they throw a bunch of fiber, but if it's IBS-constipation, that could make things painful. As difficult as this may sound, it may be worth going on a very, very basic diet and then slowly adding foods in once every few days to see if it makes any difference. And by basic, I mean like baby food and Pedialyte.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Kim in CO
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Date Joined Aug 2017
Total Posts : 2
   Posted 8/19/2017 9:38 AM (GMT -7)   
Has she done a hydrogen breath test to look for SIBO? I have SIBO and suffer from most of what you mentioned. But, people do typically consider SIBO a secondary condition caused by something else so if she has that, you still may need to try to get to the underlying cause of the SIBO (food poisoning, slow motility, etc).

beave
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Date Joined Mar 2007
Total Posts : 1653
   Posted 8/19/2017 11:19 PM (GMT -7)   
Testing for SIBO is a good idea.

If I were you or the doctor, I'd want a better view of the small intestine. That would mean an MRI with *oral* contrast that fills up the small bowel with contrast so they can get good views of it. If that shows inflammation, Crohn's is highly suspect.

If it comes back clear, then Crohn's is unlikely. In that case I'd look more into food intolerances, immune problems related to certain foods or amino acids, things along those lines (there are some rare ones out there).

Labradorite
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Date Joined Sep 2009
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   Posted 8/19/2017 11:38 PM (GMT -7)   
I am sorry you and your daughter are going through this.
I agree with straydog about the prunes. I have had many issues with constipation in the past and things like miralax always made me sick. When things are bad I'll have about 6oz of the juice with dinner and it helps enormously.

I can kind of relate to what your daughter is going through. When I was her age, long long before I was diagnosed with crohns, I would wake up feeling unwell but be okay throughout the day but then have a lot of gut pain in the evening that made me have to sit down and curl up. My family thought I was just trying to get out of chores because it was like clock work every night at pretty much the same time. I have no idea what it was but part of me wonders if it was related to what I would later be diagnosed with. Definitely keep searching for answers! Does she get any other pains like knee or joint issues?
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