Undiagnosed child with symptoms

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ben11

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Sep 26, 2014
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Hi guys not sure how to make a post OK well my son been has been having diaherra and abdominal pain for last 3 months after using antibiotics he had 2 stool test pcr for c diff negative doctor ruled that out he had upper gi normal fecal calpro 65 slightly raised gi says he thinks ibs any ideas input Ben is 11 thanks
 
Has he had mre ? Pillcam ? Or lower colonscopy?
Ibs is a dx of exclusion so they need to rule out other causes
Was he checked for lactose intolerance celiac etc...?
 
Could be a number of things. I'd want a thorough work-up as far as labs are concerned (CBC, SED, Metabolic Panel, Stool tests for bacteria, etc.). If that looked normal I think an MRI or full set of scopes would be reasonable to ask for. I wouldn't accept an IBS diagnosis unless all other possibilities have been ruled out.
 
Son undiagnosed need advice

Mind my short cut writing on mobile) OK Ben was on antibiotics for about 5 weeks he had diaherra throughout it finished the course. After finishing diaherra abdominal pain. Now we went to a gi he did to stool sample pcr for c diff negative gi has ruled that out. Fecal calpro is 65 gi said some peoples are mildly/ slightly raised . Gi thinks ibs. Need advice you guys no what's going on what should include say to gi , gi hasn't rules out Crohn's now Ben had a colons copy 6 weeks ago nothing shown. Now Bens been out of skool for a few weeks in just want a diagnosis whatever it is so he can get treated and go to school . Now his symptoms are loose watery diaherra left side cramps achy right side cramps achy lower both sides mucous in stool sometimes fever on and off but constant cramp on both sides like i said gi thinks ibs from antibiotics atm just want diagnosis
 
Yes he had a colonscopy nothing was shown also an upper gi normal had all blood test, some are slightly raised like esr crp something like 7 and normal is 5 so gi thinks nothing of it that thank you guys very much for replying.
 
Yes he had a colonscopy nothing was shown also an upper gi normal had all blood test, some are slightly raised like esr crp something like 7 and normal is 5 so gi thinks nothing of it also will be getting a referral to a rheumatologist because Bens older brother has spondylitis and Bens been having symptoms thanks guys so much for replying celiac negative bacteria negative all ruled out all food intolerance ruled out he hasn't had a pill cam gi hasnt mentioned any of those things
 
A rheumatologist is a good idea, given his brother's diagnosis. Juvenile Spondyloarthritis can also cause gut inflammation. Both my daughters have Ankylosing Spondylitis and the younger one also has IBD.

If you can get the GI to listen, I would ask for a pillcam or MRE.
 
Thanks maya yes it is a good idea will definitely get a referral how did your kids get the diagnosis for both ibd and spondylitis I know spondylitis an mri of the sacroiliac joint will confirm, what about ibd what gave your kids a diagnosis thanks
 
Yes
Colonoscopy looked normal but his biopsy slides showed chronic and acute inflammation as well as non caseating eptheloid granulomas in multiple spots.
Mre showed thickening of the terminal ileum.
 
If a colonscopy is normal that rules out uc? My gi said uc would of shown in the colonscopy so he has ruled that out.. He has ruled out uc, celiac food intolerance ect
 
Welcome to the forum, but sorry to hear about your son. My 9 yr old son was dx'd with Crohn's last yr. The symptoms my son had, plus blood work results, and what was visually seen during his scopes, gave us the working dx of Crohn's. My son also had ultrasounds, an MRE, and an indium (white blood cell) scan, but it is the biopsy results from the scopes that confirmed the dx. Like the others have said, I don't think I would accept an IBS dx yet, until all other tests have been exhausted. I hope you get some answers soon!
 
Ben11, my son's symptoms were fatigue, abdominal pain around his navel which worsened after eating, daily fevers, night sweats, frequent nighttime urination, constipation, anemia, and weight loss. His symptoms came on suddenly, although he has always suffered from constipation. Symptoms often differ patient to patient, but I think my son's were pretty classic for Crohn's. He never had diarrhea, but as I understand it constipation is more common if Crohn's is in the small intestine, as in my son's case.
 
OK thanks ckm who recommended to see the gi? Was the first scope the one that diagnosed your son? Thanks Heather
 
When the initial bloodwork results came in, our GP called us in to discuss them. It showed my son's hemoglobin was very low. She wasn't sure what to make of it, so she sent us to the ER. They did further bloodwork, a chest X-ray, an abdominal ultrasound, things were ruled out and by 2am the ER doc thought it was either Celiac's or IBD. We were referred by the ER dr to the GI clinic for an indium scan the next day. Upper and lower scopes were done a couple weeks later, and it was the biopsies from those scopes that confirmed the dx.
 
I haven't found much talk on here about the indium scan, but it was a valuable test done on my son to pinpoint where his disease is located (jejunum of small intestine, which cannot be accessed by scopes). Something else to ask the GI about anyway.
 
I rang through the assistant to talk to the gi, I told him how I learned through you guys about pill cam scans ect he told he doesn't feel they will show anything and at this point he doesn't want to over investigate he told me he hasn't yet ruled out Crohn's but doesn't think it's that
 
I would asking for MRI. Pillcam is not commonly done in Australia.

Currently the most commonly done diet for IBS in this country is FODMAP diet.
 
A colonscopy only shows the end of the small bowel. An MRI with contrast shows the whole of the small bowel.
 
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Hi guys what do I say to the gi for more testing? Bens cramps are worse at night and his been having a fever on and over his cramps are on the right side at the moment, the thing is his gi is adimant this is ibs and is telling me not to over investigate what do I say to the gi hinting I'm not sure if it's ibs atm
 
OK iv talked to the gi after asking him quite a bit he said he will redo a colons copy once more he has said that when it's negative he is sure it's ibs he has explained it is very common for ibs after antibiotics also he said the best way of a Crohn's diagnosis is a colons copy and said if it is it will eventually show but he is certain it is ibs and I think his on top of it and is right
 
This may interest you if your son was 9 year old his faecal calprotectin level would be considered normal
 
I'm going to ask for fecal calprotectin and another colons copy what other things do you recommend to do before an ibs diagnosis is right what I'm saying is what tests to do before it's right to give ibs diagnosis?
 
If he recently had a colonoscopy and fecal calprotectin test then I'm not sure if those would be tests I would want to repeat. While symptomatic, every 3 months is good for a fecal calprotectin. If the colonoscopy was normal a repeat for the search of Crohn's would still be leaving a large portion of the digestive track uninvestigated. Sorry, I may have missed it, has he had an upper endoscopy? Since the colonoscopy only views the colon and a very tiny portion of the end of the small bowel, I would be more inclined to push for an MRE or a pill cam.

Hope you find answers soon. Also a second opinion nevers hurts.
 
Since there are a myriad of illnesses or diseases that can affect the GI tract then there is no way to say if it's not CD then it is IBS. IBS is a syndrome of exclusion but generally doesn't include fevers or blood in stool. So if you don't feel the process is moving in the right direction or some concerns aren't being addressed a second opinion with a pediatric GI at a reputable Childrens hospital would be a path to consider.
 
Yes correct it's just nothing is showing everything is negative c and I just want a diagnosis if a pill cam comes up negative I think ibs is correct I'm just not sure ?
 
I think you just have to go with your instinct. If you feel after the testing that IBS is the right dx then trying meds to help with that would be an option. There is no one that can tell you to accept or agree to a dx, especially one that is such a catch-all like IBS. There are several kids on here with IBD that have also been told they also have IBS but most have found when they get their IBD under control the IBS symptoms magically go away. This leads me to believe that, at times, GIs are quick to throw the IBS label around when lab work is normal but the IBD kid is still having symptoms. My son's labs always look pretty normal. This is not to say that some kids don't have just IBS and it can be managed with meds/diet changes etc.

The questions the GI would have to answer before I accepted such a dx is:

1. Why is he having fevers as those do not occur with IBS?
2. Why is there blood in his stool as IBS does not cause that?
3. What will our options be if you designate this dx and the meds/diet changes etc do not help.
 
DS was an Ibd kiddo who was told the extra stuff he had was just Ibs symtpoms and not part of his Ibd.. So no med change was needed. After a few extra intestinal manifestations showed up ( vasculitis ) and they changed his meds - all "Ibs" symtpoms disappeared.
Gi now knows DS has a variant of Ibd - ie not typical.
 
OK guys if Ben has another colons copy will that rule out uc ? Also I am going to ask for a few things and gets some things sorted thanks guy you all know a lot also Bens stool cultures for a few weeks ago was all negative so c dif ssalmonella ect is all ruled out definitely the gi says so at least that's ruled out
 
The colonoscopy 6 weeks ago would've ruled out UC(ulcerative colitis) since UC is a form of IBD that affects the colon only. Crohn's disease another form of IBD can affect anywhere from mouth to anus so a colonoscopy may not rule it out if it is located in the small bowel where a colonoscopy or upper endoscopy cannot reach. That is why some have suggested an MRE(magnetic resonance enterography) or a pill cam.
 
OK thank you clash I got some different answers from people about a colons copy and up but it does rule it out I think I might ask for a mre I'm not sure if it's done here
 
UC and Crohns are different so where a colonoscopy can generally rule out UC it can't rule out Crohns. Crohns can affect from mouth to anus and UC affects large bowel only.

I can't tell you that IBS would be the answer if tests are negative because there are a myriad of digestive illnesses that can affect some one. IBS does not cause blood in bowel movements nor does it cause fever.
 
OK clash thank you what other things should the gi look at ? Thanks for this information your very knowledgeable
 
Since your in Australia, I don't know how common MREs or pill cam is used. I saw Catherine tagged Dusty and she would probably be more helpful. Sometimes a SBFT(Small Bowel Follow Through), an MRI with cintrast or even a CT scan is used. Though CT scans involve more radiation that most tests and SBFT also involve radiation from xrays.
Also stool tests for parasites, C diff, and other bacterial issues.

Hope you find answers soon.
 
Can you list Ben's symptoms? I would have the faecal calprotectin repeated. If it raised I would have the colonscopy repeated.

With IBS dx i would be asking what the treatment plan. How long will we give said plan to work?

FODMAP is a good diet for IBS. Studies coming out of Monash Hospital are currently show 80% improvement rate for patients with IBS.
 
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Also, I saw where you said his C-diff stool test was negative but some have gotten a negative result then later tested positive. It might be worth retesting for C-diff.
 
Can I ask if Ben has another colons copy what can be ruled out ? Thanks Heather if negative I guess an ibs diagnosis
 
What a colonscopy can rule is whether there is active visible inflammation in the large bowel and the start of the small bowel. Negative biopsy can only rule anything wrong with the tiny area that the biopsy is taken from.

How long ago was the previous colonscopy performed?
How the symptoms worsen since previous colonscopy?

It is my understanding also is we currently don't have the worse type of C-diff that is causing lots of problems US in Australia.

I know you just what answers for your boy. I just don't think a colonscopy will give you the answers you are looking for.

If I had to choice I would choice faecal calprotectin as it is much easier on the patient.

MRI with contrast, would least look at the small bowel.

I think a MRE is used in Australia.
 
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It generally rules it out, but it could be fallible. Still if the bloody bowel movements are frequent then evidence is highly likely to be visible.
 
Ahh I thought I saw blood mentioned. I hope you find some answers soon. I'm still not certain a colonoscopy would give you the biggest picture but you know your son and his symptoms best.
 
Also guys your right a fecal calprotectin I will tell the gi about that what is normal levels in calprotectin
 
Just a few questions ben11…

What state do you live in?

Why was your son on antibiotics in the first place?

What antibiotic was he was on?

Do you have a family history of UC or Crohn’s?

Does your son have any EIM’s (Extra Intestinal Manifestations)...rashes, sore eyes, joint pains, headaches…over and above his cramping, diarrhoea and fevers?

You have been given loads of great advice so I will just add my views:

Unfortunately no test is fool proof but scoping does remain the gold standard in achieving a diagnosis of IBD simply because the GI can see the bowel for themselves and they can take biopsies of tissue. This is all good and well provided you tick all the diagnostic boxes on pathology and you have disease located in the areas of the bowel that can be reached. For UC scoping is fine as a stop point as it doesn't extend beyond the large bowel, however, as has been said, scoping rules out almost all of the small bowel where Crohn’s disease most frequently lurks. For some the only way to obtain a diagnosis of CD is via imaging. Each has it own advantages and limitations.

Ultrasound - no radiation but not as precise as scanning.

CT/E - Radiation, but allows a for a more complete picture of the abdomen both of the bowel and the structures of the abdomen outside it. It is a much faster test than MRI and radiation exposure can be wound down.

MRI/E - No radation, same advantages as CT in visualising the bowel and abdomen. The trade off for no radiation is a much longer scan time.

Pillcam - The next best thing to a GI actually seeing the bowel. Limitations are it is not suitable for everyone, a patency test (dummy run) should be done first. Pictures are of the surface of the bowel only so is be best done in conjunction with abdominal scanning. This is also the case with scoping, if CD is suspected then abdominal scanning should also be done as a complementary diagnostic tool.

If you have a family history of IBD then perhaps you could pursue an ASCA and pANCA blood test. Again it is not full proof nor diagnostic as such but it may help answer questions.

One thing to bear in mind is it is not uncommon for symptoms to be present before physical changes take place within the bowel. With that on board and should answers remain elusive, symptoms persist and a diagnosis of IBS is it then I would keep a diary. These are suggestions as to what to include and the information is in the forum wiki, click on the link:

Diary Inclusions

Dusty. xxx
 
Sorry late to the thread but wanted you to know that we were in the same spot a couple years ago.
Keep pushing for answers until your convinced their the right answers.
 
OK thanks guy Bens symptoms is loose stool abdominal cramps left and right side , okay now he has had stool tests all negative Noone family wise has ibd also thank you for answering the uc I now know uc has been ruled out, I am asking for a fecal calpro at the gi office thanks also duty I am in Victoria
 
No abdominal cramps before antibiotics, started after finishing, his stool is just a little loose now and cramps I'm going to ask about the fecal calpro ,
 
OK went to see gi he doesn't want to redo a colons copy he has ruled out uc through biopsy, he wants Ben to redo fecal calpro in a couple weeks because last time it was just slightly high which can be from anything he said , so he is redoing the fc, he told me he feels this is ibs diffinetly and said if the fc comes back normal he is sure it's ibs so that's good where getting somewhere
 
It just await game now. You have a plan with the GI.

I hoping are you and Ben that the faecal calprotectin back lower and you can both move forward with a treatment plan for IBS.

Yes that are people on the forum with dx with both IBS and Crohn's.
 
Ok apperantly ben fc is less then 20
We havnt seen the gi we go it through the lab
What some questions i should ask the gi?
 

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