• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Chron's and Down Syndrome

Hi,
This is my first post. My 7 yr old son has DS & is currently being investigated for Chron's. He's had loose, foul smelling stool in various colors including yellow/tan/orange/maroon/ and some normal color/consistency occasionally with a lot of mucous. He's had upper endoscopy and colonoscopy revealing chronic inactive gastritis and acute duodenitis with focal ulceration. He had an EGD years ago that showed chronic inactive gastritis, too. He's had a complicated medical history including an imperforate anus. Happy kid, still not very verbal and does not indicate pain so that stool was a major red flag. H Pylori negative and now we are in the midst of coming up with a plan to investigate small bowel. He won't willingly drink contrast, not sure if they would be willing to sedate and do capsule endoscopy without knowing if he has any narrowing. So that's where we are at...

I did just read about a white blood cell scan...that looked like maybe it could be an option but not sure if they do that at our hospital. Has anyone's kids had that??

Maybe I should have posted in the not diagnosed yet forum...but was curious if any parents have kids with Down Syndrome diagnosed with Chron's. I really felt like this was a malabsorbtion issue from the start...stool samples were mostly fine...he had 2 calprotectin mildly elevated and a mildly elevated ESR lab. But I just read that chron's could cause the intermittent yellow stools (they aren't yellow totally but there is yellow in them, bulky, sometimes yellow/white) and also malabsorption if it's in the small bowel which is what we are going to look at next....so I'm a little nervous now.

Anyway just wanted to make a post and see if anyone had any input.
Thank you!
 

my little penguin

Moderator
Staff member
Can you do a nasal gastric tube to get the contrast /barium in for the MRE ?
If not the can use milk ?
also they can do an ultrasound with contrast (iv)?
as far as the pill cam (capsule endoscopy) -they can do a “dummy “ pill first to make sure the real thing will go through
It doesn’t need surgically removed if it gets stuck since it dissolves(maybe )

if he has crohns they can place the pill cam in the duodenum during the scope for the future

there is pancreatic insufficiency which causes malabsorption and (changes stool consistency/color )
Most crohns patients have diarrhea or constipation
Some blood , some green dye to fast transit
But not the rainbow of colors
Did they also test for cystic fibrosis-(causes malabsorption and sometimes is very mild affecting the gut ) ?
 
Thanks for your reply! One of our challenges is he is tiny but *really* strong and has had many medical procedures, surgeries, etc. I don't think they would get an NG tube in unless he was sedated at this point. He was sedated to put an ng tube in for manometry study and they had to put braces on his elbows so he wouldn't pull it out. My bigger concern is if he would be able to tolerate the MRE or CT unsedated in general. We did hold him down to force barium in for an upper esophagram. It's so sad. In the process now of finding out if we can mix stuff with milk / Carnation but if he notices the flavor he just won't drink it.

An ultrasound with IV contrast can show if chrons is in small bowel?

He is constipation managed in general...due to his anorectal malformation at birth, he's been in hospital for impacted stool...so he's on Miralax and 2 Senna doses daily. He had normal colored, soft bms till about 6 months ago. His diet is limited, he is still on purees - yogurt, peaches, mango, spaghetti os, sweet potato, pasta, ice cream, milk, carnation, water.

Celiac and lactose labs/biopsies were negative
His stool pancreatic enzyme test was normal. They did not test for cystic fibrosis other than at birth. I wondered about that. We did discuss possibly seeing genetics because his body went into an acidosis state after his cleanout and upper/lower study.
 
Diet is limited in that the stool change is definitely not diet related. Nothing changed there but his stool has changed dramatically in color, consistency, odor, it's not every BM but it goes through cycles. Globs of mucous in play doh type consistency, fluffy bulky stool, it seriously looks unhealthy
 

my little penguin

Moderator
Staff member
My kiddo developed an allergy to contrast barium
So while he has crohns and had MRE in the past
Not recommend now
They have done ultrasounds to detect inflammation or active disease on him
It has to be at a large pediatric hospital that is trained specifically to review them for crohns

His are without contrast so not as good but better than nothing

MRE are long
They take an hour of staying completely still so ….
Cte is a similar but leaps and bounds faster just more radiation

not sure how to getaway with MRE without sedation

but if fecal cal was under 150
(Over 50 is abnormal but under 150 is borderline )
And lower scopes were clean ….

maybe genetics panel might help
We have done 3-4 panels
Including full whole exome sequencing through nih
Would love to say we found why Ds has extra stuff going on (auto inflammatory disease ) but no

worth a look though
Takes about 3 weeks

some immunodeficiency diseases in kiddos mimic crohns

my child /young adult does not have Downs
So testing is much easier
Hugs 🤗
 
Huh. Well I think because of duodenal ulcers w/o h pylori she just wants to make sure we aren't missing anything and that we rule out chrons as the mucous has to be coming from somewhere. We do have a pediatric hospital, not a huge one but I can look into the ultrasound idea. I like the idea of white blood cell scan but don't know if that is something they do here. Huh. Well we should know by next week what the plan is! Thank you!!!
 

Maya142

Moderator
Staff member
Unfortunately, you can't do an MRE or CTE sedated - they can't sedate a child who has had contrast (whether by NG or by mouth) because of the risk of aspiration. My daughter had a suspected obstruction and had trouble doing an MRE (couldn't tolerate the contrast or the scan due to the amount of pain) and the only solution we were given was to do a CTE. So in your son's case, they'd have to restrain him and put in the NG tube and contrast and then get him to lie still or restrain him for 15 minutes or so. Luckily the CTE isn't too long, but it is a lot of radiation, which isn't ideal.

I think a capsule endoscopy would be doable if you did the dummy pillcam first. Like MLP said, it will just dissolve it gets stuck. They may have to do an EGD to place it in his duodenum - if he has slow gastric emptying (which can be caused by inflammation in the stomach) then it will just sit in his stomach and you won't get a good look at his small bowel.

Has the doctor given a reason for the duodenal ulcers? Because if not, I would want to know what is causing them if not Crohn's. It's rare to have just upper GI Crohn's but it can happen. I do think it is worth investigating his small bowel based on the ulcers and his high Fecal Calprotectin and ESR.

Has he had blood work to check his liver function? That can impact stool color, making it pale or tan or light yellow.
 
Initially she thought it looked like H pylori but pathology came back negative. Seeing how he still has a lot of mucous in his stool (which I think is more concerning to her than the looseness or color actually) and he's never had his small bowel checked, and he does not indicate pain the way a neurotypical child would, mostly because he has a high tolerance, I think some kids w DS are like that... he's got ulcers and inflammation and just goes about his day. Sometimes he gets quiet and just sits there....her concern is that in light of ulcers, we should investigate so we don't miss something. That when a kiddo has duodenal ulcers w/o h pylori chrons is suspicion. I was told his calprotectin was elevated twice neither beyond borderline but small bowel inflammation doesn't always elevate it as high? Anyway he has had 2 gastric emptying scans like 2018/2020 both normal (one at home hospital another at Nationwide) and he's had barium swallows/esophagram/upper GI so no motility in upper. He had a comprehensive metabolic panel and ast/alt/bilirubin/alk phosphatase we're all normal, if alk phosphatase was off it was mild.

I've been trying to figure out what's going on with him. My personal diagnosis was fat malabsorption, something w/gallbladder or bie related. I thought for sure she was going to say we ruled out chrons but not till we check small bowel. If that's good we can more confidentiality do so but then of course we still don't have answers for mucous. He's always been slow to gain weight, he had lost a couple of pounds but may have rebounded. He's been hoovering in the 37/39 range for over a year and he's 7. His diet is still purees because we had a lot of struggle advancing his diet. Motility disorder was suspected but he had a vascular ring plus sensory issues and anyway so that's part of it but he gets plenty of calories.

I don't blink when something sounds rare I think oh then he probably has it. He has had a few conditions of having a less than 1 percent chance of having so nothing phases me. If he's not sedated he won't be still, even restrained...and if it's not super quick we can't do it. I'm not torturing him to get a radiology report with motion artifacting obscuring results. I know, I thought about the contrast thinking he can't go under anesthesia after putting something in his stomach.
 

my little penguin

Moderator
Staff member
Definitely have your Gi consult with Children’s of Philadelphia veo ibd clinic - they may have a few tricks up their sleeves for testing and can recommend a place close to you that does the ultrasound with contrast
At least then he can “wiggle “
 
I can't find how to edit my post so to clarify...he does not have a motility disorder, that was ruled out. And I was suspicious about something bile related. Just don't know what. He gets orangy but has a high orange diet. He also gets pale. But w/all his labs has not shown liver dysfunction or anemia
 
I'll have to ask if they can do ultrasound with contrast. We have a pediatric hospital. He went to nationwide for manometry and Boston for vascular ring surgery but they do a lot at our home children's hospital. I still think the white blood cell scan sounds interesting. Where they remove blood, take out the white cells to infuse with a radio nucleotide or something then put it back in and scan him 20 hours later...the white blood cells will congregate where there's inflammation...or something like that I only read about it last night.....
 

my little penguin

Moderator
Staff member
If you do the ultrasound locally
You need someone who has done and read multiple ultrasound on pediatric crohns patients
Otherwise things get muddy on what they are looking at
For my kiddo the Gi had to order a very specific ultrasound and since it was for crohns could only be done at one location /site even though radiology knows how to do abdominal ultrasounds
This is very special one
 
Unfortunately, you can't do an MRE or CTE sedated - they can't sedate a child who has had contrast (whether by NG or by mouth) because of the risk of aspiration. My daughter had a suspected obstruction and had trouble doing an MRE (couldn't tolerate the contrast or the scan due to the amount of pain) and the only solution we were given was to do a CTE. So in your son's case, they'd have to restrain him and put in the NG tube and contrast and then get him to lie still or restrain him for 15 minutes or so. Luckily the CTE isn't too long, but it is a lot of radiation, which isn't ideal.

I think a capsule endoscopy would be doable if you did the dummy pillcam first. Like MLP said, it will just dissolve it gets stuck. They may have to do an EGD to place it in his duodenum - if he has slow gastric emptying (which can be caused by inflammation in the stomach) then it will just sit in his stomach and you won't get a good look at his small bowel.

Has the doctor given a reason for the duodenal ulcers? Because if not, I would want to know what is causing them if not Crohn's. It's rare to have just upper GI Crohn's but it can happen. I do think it is worth investigating his small bowel based on the ulcers and his high Fecal Calprotectin and ESR.

Has he had blood work to check his liver function? That can impact stool color, making it pale or tan or light yellow.
My teen is getting MRE with contrast and when we looked into a children's hospital as recommended by people here we were told the local Children's Hospital only does them sedated. I double checked, but maybe they misunderstood me both times. What Maya said makes sense about aspiration risk.

OP, my teen has HFA and he definitely benefits from being totally prepared. Not sure if this is helpful to your son since my son used to have language issues, but now they are much milder, but just in case this is useful now or in the future... There are 2 children's videos I found on youtube to prepare them for MRE-the machine, the sounds, the experience. We practiced having him lie still and hold his breath periodically while we made loud sounds and the practice went fine, but he's older. I prepared him for the sounds because when he was your son's age he had major sensory issues. Time will tell if any of this helped. Of course if your son won't drink contrast I guess it would not be an option.

Please keep us posted.
 

Maya142

Moderator
Staff member
Talking to Child Life can also really help - they have lots of strategies to prepare young kids for MRIs and other tests.

We have been told at two of the best Children's Hospitals (ranked highest for GI and overall) in the country that an MRE or CTE absolutely cannot be done with sedation. If they're using just IV contrast and it's an abdominal CT with IV contrast for example, then they could use sedation (but those are so quick that I don't know if you'd need it). An MRE is always done with oral contrast though, so I don't know how it can possibly be done with sedation. Perhaps they were talking about an MRI without oral contrast @Stressedmom?

My daughter was very, very unwell with a suspected obstruction, and was completely unable to eat or even drink water and was on TPN. Was putting out over 1 L of bile through her G tube (!!!) in a day and was admitted with severe dehydration. She had to have the contrast through her tube and could barely keep that down. She was still unable to do an MRE because she couldn't lie on her stomach - she was in too much pain. We begged for sedation and were told absolutely not possible due to aspiration and there was no way besides an MRE or CTE to really rule out an obstruction. She was able to do a CTE though.

I think your best bet is a capsule endoscopy - first with a dummy pill to rule out strictures. Can your son swallow pills @autumn77 ? It's quite a big pill so they may have to do it with an EGD and place it in his small bowel. It's good to know he doesn't have motility issues though. Or an ultrasound with IV contrast (though I honestly think a pillcam would tell you more).

The white blood cell scan does sound like something your son might be able to tolerate, but to be honest, in all my years on this forum (9 years), I've only seen it used once or twice. It's not something that is routinely done for Crohn's. But your son is a special case, so worth asking about.

Initially she thought it looked like H pylori but pathology came back negative. Seeing how he still has a lot of mucous in his stool (which I think is more concerning to her than the looseness or color actually) and he's never had his small bowel checked, and he does not indicate pain the way a neurotypical child would, mostly because he has a high tolerance, I think some kids w DS are like that... he's got ulcers and inflammation and just goes about his day. Sometimes he gets quiet and just sits there....her concern is that in light of ulcers, we should investigate so we don't miss something. That when a kiddo has duodenal ulcers w/o h pylori chrons is suspicion. I was told his calprotectin was elevated twice neither beyond borderline but small bowel inflammation doesn't always elevate it as high?
I do definitely agree they need to rule out more small bowel disease because like you said, with small bowel disease Fecal Calprotectin tends to be high, but lower than with colonic disease and your son does have a high FCP and high ESR and duodenal ulceration. Even if they don't find anything, I would be suspicious of the duodenal ulceration because what is causing that, if not inflammation? He's not on NSAIDs, is he?

If he's not sedated he won't be still, even restrained...and if it's not super quick we can't do it. I'm not torturing him to get a radiology report with motion artifacting obscuring results.
Also agree with this - no point in traumatizing him further. Poor kiddo.
 
No he won't be able to swallow the dummy or regular capsule. I thought about them putting it in sedated but they would have to keep him sedated the whole time the dummy went through to be able to put regular capsule in. I don't think they would keep him sedated that long.

He was on a daily aspirin lol dose for 1 year till November. But he's been on omeprazole that whole time, so for 6 months after he was off aspirin he was on omeprazole. He was weaned off Omeprazole a couple of weeks before scopes and put back on it at a slightly higher dose.
 
Maya142-I bet the person I spoke with was confused. The children's hospital near us is not one of the leading hospitals.

Autumn77-I would think the top centers have dealt with this. The name I got for Boston Children's of someone with special needs experience is Dr. Timothy Buie. He has worked more with autism spectrum and GI issues, but I would assume the clinic have seen plenty of kids for whom MRE with contrast, etc are just not options. Here is a link:

Please keep us posted.
 
I know of him, I watched video he has online about reflux and kids w/asd, by son had been pressing his neck for months which most people were attributing to
 
I know of him, I watched video he has online about reflux and kids w/asd, by son had been pressing his neck for months which most people attributed as sensory seeking. Or reflux but he also had been intubated a number of times and wanted to rule out structures... plus his swallowing stuff but yea Omeprazole finally made that behavior stop. But it was the only place I found someone showing how a nonverbal child might exhibit reflux pain that way.

i really don't want to travel for this hopefully we can stay at home hospital. But I'd go back to Boston or Nationwide if need be.
 
I know of him, I watched video he has online about reflux and kids w/asd, by son had been pressing his neck for months which most people attributed as sensory seeking. Or reflux but he also had been intubated a number of times and wanted to rule out structures... plus his swallowing stuff but yea Omeprazole finally made that behavior stop. But it was the only place I found someone showing how a nonverbal child might exhibit reflux pain that way.

i really don't want to travel for this hopefully we can stay at home hospital. But I'd go back to Boston or Nationwide if need be.
Isn't Dr. Buie awesome? I wish there were more GI doctors like him around. You may want to just call his office and ask what options they use for kids who cannot do MRE or capsule endoscopy and see if they know if you need a top Children's hospital for this or if there are more convenient options.

You were so smart to watch those videos and figure out the reflux. My son was hospitalized with GERD as a newborn, but eventually got off meds by preschool. He now as a teen has Barrett's Esophagus and now that I am reading up on it the only sign we had that reflux continued was that he gagged transitioning to solids. I hired a feeding therapist OT and she may have mentioned in passing to visit the GI doctor, but she got him eating solids and so we move on. The only other sign I had is that he needed a lot of upright time to digest, but so do I.

Is there any chance the PPIs are contributing to your son's issues? Our son is on a very high dose of the same one as your son and when we got up to the dose the doctor wanted, our son reported some unusual BM colors now and then which so far have not concerned the Dr.

Also, I don't recall if you mentioned this, when you got the scopes, did the doctor do a disaccharidase assay to look at malabsorption?
 
Last edited:
Yes his dissacharides were all normal so we have ruled out lactose intolerance. It's not so much the color, although I did read that chrons can cause some yellow stool due to malabsorption, which he does get. It's more the mucous that has her concerned.

The stool color oddities have been going on for a while and he had been on the Omeprazole at a an average dose for a while prior. It still was only one up 2 mls, I think to adjust for his weight. I wondered if going off Omeprazole is what caused the ulcers. Except, he had chronic inactive gastritis on a scope a few years ago and that's before he was ever on omeprazole. No H pylori then either and his duodenum was visually nodular but didn't show up anything on pathology. This time it did show as acute inflammation with ulceration (a couple of years later) & he's been on and off Omeprazole during that time.
 

my little penguin

Moderator
Staff member
Pathology can be picky
Some only check the crohns box on the form if non caseating granulomas are found
Which is only found 33% of the time
Given his young age
Might be worth a second opinion at chop veo ibd clinic
They will re read his pathology slides
And know little kids who do “different “
 

crohnsinct

Well-known member
My daughter's have been to several IBD specialists and mucus gets barely an eyebrow raise and they have known IBD. Mucus is actually much more of a hallmark symptom of IBS and SIBO. I don't tell you this to poo poo (sun totally intended) your concerns but just to calm your fears a little. I think it is fantastic that your GI is investigating further but it still could be something other than IBD. Pathology just reports what they see. The real diagnosis will come from your GI based on what they see and what pathology says etc.

I also wanted to say that there are very advanced ultrasounds being used now in a few centers. Stanford Children's append to be one of them. There were quite a few presentations on this ultrasound technique at DDW last week. IDK if any children's hospitals in your area are using it but it might be worth going to an adult hospital given the extenuating circumstances. I will see if I can track down a few names for you.
 
That's good to hear about mucous. Yea, I suspect if small bowel looks ok IBS will be his diagnosis. They ruled out all the different stool parasites.

One other thing is that when his stool is loose and yellowish or has the yellow stool mixed in, it also smells like vomit. Poop smells...but it cycles through being rancid. And he has the same diet every single day so not like oh, he ate fried food (I wish!!!!!) or something.

GI is in touch with radiology and I should hear this week hopefully what our imaging plan should be. I MyCharted questions about contrast enhanced ultrasound, sedated CT/MRI with IV contrast (if that could possibly show ANYTHING, even rule out narrowing to be able to put in pill cam) and my bright idea about the wbc scan. We can also force barium in with a syringe :( as a last resort and hold him for CT but that is my last resort it will be Sssssoooooo sad, likely yield blurry results and be a torturous, traumatizing waste of time.

Thanks for all the replies, it's nice to hear first hand experience!!! I wish I found a forum like this when I was researching his aberrant right subclavian artery!!!!

So obviously I will see what Dr suggests before we make a move to go elsewhere....but I will gladly collect names of recommended physicians. Not sure I'd go to chop think I'd go to Boston or Nationwide since he's already been to those 2 hospitals, good grief he's an interstate medical traveler lol!! Hopefully it doesn't come to that. :/
 

crohnsinct

Well-known member
Sorry had to laugh at interstate medical traveler. My daughter is seen at Boston, goes to school in southeast but I recently took her to Midwest for her colo rectal surgery. When you have a niche disease you have to travel for the experts. You get used to it. Unfortunately you are juggling quite a few things at the same time but are doing an awesome job of it!

I really hope you don’t have to add IBD to the list but if you do, we are here for you!

Still getting that ultrasound name for you.
 

Maya142

Moderator
Staff member
So obviously I will see what Dr suggests before we make a move to go elsewhere....but I will gladly collect names of recommended physicians. Not sure I'd go to chop think I'd go to Boston or Nationwide since he's already been to those 2 hospitals, good grief he's an interstate medical traveler lol!! Hopefully it doesn't come to that. :/
Unfortunately, quite a few of us have had to take our children to lots of hospitals. As I'm sure you already know, different hospitals are good for different things. My kiddo is complex too and is definitely an interstate medical traveler! She has doctors in 5 states now.

We can also force barium in with a syringe :( as a last resort and hold him for CT but that is my last resort it will be Sssssoooooo sad, likely yield blurry results and be a torturous, traumatizing waste of time.
Poor kiddo. He's really been through a lot, I'm sure. I just wanted to say that for a CTE, the contrast is not the thick, chalky white barium they use for an upper GI/swallowing study or upper GI with small bowel follow through. It's the same as used for the MRE - it's called Breeza and it's a thin, colorless liquid - much easier to tolerate and keep down than Barium! And the test isn't long (maybe 15 minutes), but my daughter did have follow certain commands (hold your breath, put your arms above your head - I was in the room with her). This was at Boston Children's.

You said he had an upper GI before - did he have an upper GI with small bowel follow through? It looks at the small bowel in addition to looking at the esophagus and stomach. You could consider that though I know it would require restraining him and putting Barium in his stomach through a NG tube, but it would rule out strictures and show thickening. And then you could do a pillcam to get a better look. It's essentially the same as an upper GI, except you wait for the contrast to go through the small bowel. But he doesn't have to be restrained or even on the table while you wait. They'll check periodically to see where it is and once it's through his small bowel, they'll take more pictures. It is radiation, but so is a CT or CTE. And he can wiggle while on the table - he doesn't have to be absolutely still like in an MRI. An upper GI with SBFT is an older test so it's likely to be available at your home hospital.

Has anyone tested for Small Intestinal Bacterial Overgrowth (SIBO)? That's another option that came to mind when you mentioned the color of his stool and the smell.

We have also been told mucus is really not something to worry about.
 
It's been determined that a CT enterography is the way to go, just waiting to hear if they will sedate him for NG tube placement, then wake him to put in iral contrast, and do the scan. Otherwise they won't get an oz let alone 500-900 mls of oral contrast in him. :/

Regarding mucous...so, not bring something to worry about...vs could it be an indicator of chrons? Obviously blood in stool is a concern...IBD or not...but I think his Dr just sees that as a sign that there could be something going on in small bowel.

Also curious because the mucousy loose stools that he gets cycle through with a rancid acidic smell. Sometimes it smells like vomit, today it was just pungent, acidic smelling I guess, couldn't get anyone else to give me an opinion on what it smelled like to them....brothers aren't always willing participants. I was just curious if any of you notice that with your kids stool.
 

Maya142

Moderator
Staff member
Typically kids aren't sedated for NG tube placements - my daughter did NG tube feeds for almost a year at home and placed her own tube every night. But in your son's case, it would definitely be less traumatic. But it takes 10 seconds or so, so not sure if it's worth the risk of sedation, particularly since he has to be woken up for contrast to be pumped into his stomach.
Then again, putting in an IV may also be easier if he's sedated.

Regarding mucous...so, not bring something to worry about...vs could it be an indicator of chrons? Obviously blood in stool is a concern...IBD or not...but I think his Dr just sees that as a sign that there could be something going on in small bowel.
It can occur in Crohn's and certainly plenty of patients have mucus in their stools. But so do LOTS of patients with other conditions, like IBS. And so do some perfectly healthy people. So it's really a very non-specific finding. Ulceration is a more worrisome finding, as is blood in the stool.

My daughter's CTE did not take seconds. We expected it to (I thought it would be like abdominal CT with IV contrast, just with oral contrast too) but it definitely took longer. Hers was almost two years ago now, so I can't remember exactly but I definitely remember that it was minutes, not seconds. Probably 10-15 minutes. They will do IV contrast too, as well as oral contrast and I definitely remember her having to hold her breath several times.
 

crohnsinct

Well-known member
Second the mucus comment above. Could be Crohn's but could also be a dozen other thins and could be nothing. Unfortunately like all things with the digestive system you just have to wait and see and methodically cross things off the list.

Same with the smell…it could be nothing or it could be a few different thing…more wait and see. FWIW - MY one daughter in remission has that putrid smelling stool…how do I know? I get to collect her calpro sample every four weeks and it is killer. It's exactly as you describe. Yet her calpro comes back and it is a solid 150 or lower so all good. My other daughter with severe, severe disease and calpro almost 8000, sweet baby smelling poo. It is really not an indicator of anything…as much as we would like it to be….the big joke here is that we want a check intestines light installed on our kids at scopes….

In your son's case the big things that raise the eyebrows the most are the 150 calpro (borderline) and the ulcerations that were found. Not freak out this kid must have Crohn's raise but hmmm let's look further. So I am glad your GI is looking a little more but I wouldn't be surprised if things are A.O.K. as far as IBD goes and you find yourself going down the SIBO/IBS road.
 
That all makes perfect sense!! With a nonverbal child who has a high pain tolerance it's such a balance between how much testing donee do and how do we not take the last step to be certain there isn't any disease we would be missing otherwise.
Thank you everyone for all of this great info will update when I know more.
 
So they wanted to go ahead with CTE and hope for the best that he will drink at least a little contrast. I asked if he drinks none, will we still get a chrons vs not chrons diagnosis and was told probably not. So I'm not sure this will work. In my mind the only way and least traumatic is sedate, insert ng & brace elbows, wake up, administer oral contrast and do CTE.



She's getting back in touch w/radiology again. In the meantime. Out of Boston, Nationwide and CHOP. Does anyone have experience knowing they do contrast enhanced ultrasound of small bowel for chrons diagnosis? I have to start reaching out for info. I plan to contact Timothy Buie next week.

I kind of want his gallbladder looked at too. He's had neon yellow mucous and I think that's been going on for a while because sometimes there is bright yellow under his stool in toilet. His poop was also pale tan again last night. Anyway thanks for input!
 
Top