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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.

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?
 
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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!
 
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!
I am so sorry I missed this. Are there any updates? Were you able to find a place to do contrast enhanced ultrasound of small bowel? I hope you have gotten answers to what is going on with your son. It is so frustrating how much you to have to go through to find out what is wrong. Please keep us posted. I am sorry I could not be more helpful.
 
No. we have not made any headway. it's been very frustrating hence my absence. in the meantime he still has a LOT of mucus in his stool, periodic vomiting, signs of abdominal discomfort, neck pressing. Part of me doesn't want to push not knowing for sure that we're going to find something. I did reach out to chop and got the forms to fill out if I want to go through their process. I left a voicemail on Boston's IBD second opinion line - I think that's what it was. I didn't hear back from anybody. Because my son has been there we have access to My Children's portal so I messaged Dr Buie - it went into a general GI pool and I was told that they were going to have someone call me to schedule an appointment. Nobody did. So I sent another message and the same thing happened. We had a virtual appointment with his local GI in August who said she was going to discuss with her colleagues and come up with a plan and get back to me the next week. I never heard from her.

I've been just very discouraged and frustrated about this whole process. He has a GI appointment this Monday in person. This has to be the last one without moving forward on something.

The dilemma is how to get oral contrast in him. he won't drink it - he simply won't. and that's a lot of radiation and a lot of everybody's time for what will likely be imaging full of artifacting.

I asked how about a sedated contrast enhanced MRI. There would be no oral contrast or distention of the bowels but it would be the least amount of radiation and a perfectly still image. I didn't get a response but I'm going to ask again on Monday. Does anybody here know if an MRI without oral contrast could show any indications of Crohn's? It might not be the best test available but I feel like it's the best solution for him. he's having hernias repaired next month so he's already going to be sedated I'm curious if they would be willing to do an MRI at same time, although that might be a long time to keep him sedated. I hate to constantly put him under. Anyway. That's where we're at!!
 

my little penguin

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We were told mri without contrast would be useless
Ds is allergic to contrast
What about ultrasound ?
Quick easy and he can wiggle all he wants
Decent image without contrast
Not as good as MRE
But
Chop does crohns specific ultrasounds


Sorry your having a tough time
Typically until you get an appt they tend to send you in the silent circles
 
When I spoke to someone at chop I was told they would first do a regular ultrasound at the end of the small bowel and then if they saw something they would do a contrast enhanced ultrasound... But I got the impression that it doesn't get a good image of the entire small bowel. I guess there's no one perfect solution.

I want an MRI with IV contrast. Just not oral because I want him sedated. So that's what I am wondering if an MRI with IV contrast will show anything.
 

my little penguin

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They have movie goggles with headphones so it blocks everything else out
You can bring any dvd you want or they can let you pick one
 
We used YouTube for an ultrasound he had but that was with me hugging him (kidney scan, they did from behind) and he still was freaking out... just the things that work with most kids just don't with him.
 

my little penguin

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The problem is the oral contrast shows the thickening of the intestine
Iv contrast can show things but won’t plump the tissue to see if inflammation is there
Like oral contrast
 
Gotcha. Sigh. Well. We shall see what his Dr says Mon. I guess I was hoping that an MRI would at least have very detailed imaging of soft tissue and sedated there would be no artifacting and maybe there would be enough to make a diagnosis one way or another versus this constant limbo. :/
 
I DMed you with more specifics to our experience, but for general stuff I will post here so others with more experience can chime in. (My son is now doing his own online research on Crohn's so I try to not to put any identifying info on public posts).

When the calprotectin was borderline was he on omeprazole? I have read that can cause mild elevations. You are right though it could be a small bowel issue which can be significant and just cause borderline calprotectin.

So, this obviously isn't ideal.....But if they can't confirm via say ultrasound whether it is safe to a pillcam placement during the next EGD, then I am wondering if they can do trials of meds based on what is known. This technology has not been around that long and there are plenty of people who had small bowel issues before pillcam. Obviously, it's not ideal, but you know there is some inflammation because there are ulcers. Also, as I mentioned in my DM, I am wondering if by "nodular" duodendum they were saying lymphonodular hyperplasia, which while common in children undergoing scopes, it is often seen as a sign of mild inflammation due to anything from fighting an infection to food allergies to crohn's and I have read that in and of itself can cause symptoms, though it is not classified as a diagnosis if that makes sense. So how might they have addressed signs of inflammation before this technology? If somehow you could do a pillcam and they found ulcers and other things, would that change the approach or would they try the same meds used to treat the known inflammation just for a longer duration? You already know there are issues with the part of the duodendum they could access, correct? Did they ever give meds for that?

Also, as mentioned by another poster, you could go ahead with SIBO testing or you could also have that done during next EGD (which is more accurate). That would let you know if it's worth it to try antibiotics as part of the treatment protocol.

ETA: I see you mention limited diet, but that doesn't mean he doesn't have food allergies. He could develop a food allergy at any time. Has he been tested? It's great you know every food to test. Also, I would see if you can test any preservatives, additives in the foods he eats. I am just throwing this out there, but please consult with a doctor because I would hate to suggest more testing, even just skin tests or playing around with a food diary when he has already been through so much, as have you and his diet is already limited.
 
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I'm not positive if he was on Omeprazole at the time of his calprotectin lab... it's possible as he has been on and off it a bunch.

how fast can an ulcer form? I'm curious because the day before it was detected he was fasting and cleaning out for a colonoscopy / EGD and that created a lot of vomiting and he doesn't eat or drink anything that would fall into the realm of clears other than water. after his colonoscopy his lab results showed his bicarbonate was in critical range and we went to the ER for fluids and they did labs and urinalysis and his ketones were elevated.

so he is still on purees. he eats yogurt, sweet potatoes with turkey, there are a couple of Gerber stage 2 dinners like macaroni and cheese and turkey and sweet potato that I get plus mango bananas/peaches/carrots/strawberries all pureed... SpaghettiOs and various macaronis and cheeses plus whole milk and carnation instant breakfast.

He's had biopsies done and labs and all has shown negative for celiac, lactose intolerance, and the various disaccharides were all normal.

I was only reading what was in the pathology report about the nodularity and that's all it said. That was his first egd a couple years ago. This last one in May found acute duodenitis with focal ulceration, No villous blunting or increased intraepithelial lymphocytes
identified, and Stomach, biopsy: Superficial chronic inactive gastritis in oxyntic-type mucosa. - No Helicobacter organisms identified on standard H&E-stained sections.

Ok more later gotta drive!
 

Maya142

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What happened to the CTE? I thought that was the plan because it's a relatively quick test. They would have to put in an NG tube or NJ tube though.
 
I'm not positive if he was on Omeprazole at the time of his calprotectin lab... it's possible as he has been on and off it a bunch.

how fast can an ulcer form? I'm curious because the day before it was detected he was fasting and cleaning out for a colonoscopy / EGD and that created a lot of vomiting and he doesn't eat or drink anything that would fall into the realm of clears other than water. after his colonoscopy his lab results showed his bicarbonate was in critical range and we went to the ER for fluids and they did labs and urinalysis and his ketones were elevated.

so he is still on purees. he eats yogurt, sweet potatoes with turkey, there are a couple of Gerber stage 2 dinners like macaroni and cheese and turkey and sweet potato that I get plus mango bananas/peaches/carrots/strawberries all pureed... SpaghettiOs and various macaronis and cheeses plus whole milk and carnation instant breakfast.

He's had biopsies done and labs and all has shown negative for celiac, lactose intolerance, and the various disaccharides were all normal.

I was only reading what was in the pathology report about the nodularity and that's all it said. That was his first egd a couple years ago. This last one in May found acute duodenitis with focal ulceration, No villous blunting or increased intraepithelial lymphocytes
identified, and Stomach, biopsy: Superficial chronic inactive gastritis in oxyntic-type mucosa. - No Helicobacter organisms identified on standard H&E-stained sections.

Ok more later gotta drive!

Not sure how fast an ulcer can form, but prep for scopes can cause some mild erosion.

Has he ever been tested for milk protein allergy (not the same as lactose intolerance)? I think I read that can sometimes cause or perhaps just correlate (very different) with duodentitis. I think other food allergies can sometimes be associated with it too though what you hear most about is Celiac (which I know you ruled out).

Was he given anything to treat the duodentis? Is he still on omeprazole for the reflux? What would they do if they found Crohn's through pillcam? The meds used for Crohn's can also be used for non-Crohn's inflammation. Of course it helps to know so you can figure out things long term, but for now you want to get the symptoms under control and it sounds like they at least know there is inflammation.
 
Yes. That's why the test never moved forward. We couldn't come to agreement on doing Ng tube...they didn't want to...I asked if we didn't, and he drank zero oral contrast would we still get any results to confirm or rule out chrons and I was told probably not. So I asked, then why are we doing this? It's a waste of everyone's time plus insurance $ to do this for inconclusive results.
 
He was put back on the omeprazole for the duodenitis...he had only been off it for a few weeks prior.

Oh, so where I was going with the how fast can an ulcer form. Bicarbonate is produced in the pancreas right? So if his bicarbonate was critically low that means he wasn't producing any at the time which means none of the acids were being neutralized in his duodenum during that day that he was having his clean out. I wondered could he have gotten an ulcer in one day. The suspicion for Crohn's got higher because of the ulcer
 

my little penguin

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Milk or soy protein Intolerance can cause Gi issues but that is mainly seen in infants only
Milk allergy is IgE mediated and causes immediate symptoms that can be life threatening not just Gi upset
It is never recommended to test for food allergies randomly since false positive happen
And must be taken in context with clinical history and ppv (positive predictive value ) of the blood test results /skin test

The gold standard for true food allergies is an in office food challenge
If your child can eat a full serving then they are not considered allergic

Intolerance or eosinophilic disorders are a different type of reaction to food Than food allergy
An allergist would work with a Gi on these
EoE /Ec etc do patch testing
This can cause symptoms similar to crohns
Some say precursor to crohns
But treated differently


Cincinnati childrens is one of the tops in the country
 

Maya142

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They didn’t want to do an NG tube? But that’s routinely done for young kids who won’t drink the contrast. Was this at Boston Children’s? My daughter’s CTE was at Boston Children’s and the nurse there said they often used NG tubes for kids. She already had a surgically placed tube, so we used that for the contrast.

Another option would be to do a dummy pillcam
one day and wait to for it to pass to make sure there is no narrowing. Then a different day, sedate him again and placed the pillcam. It does mean two different endoscopies and sedation twice but that may be simpler and less traumatic than any other test.
 
No not Boston. Our home hospital in Rochester NY. I called radiology to ask some questions and was told by the radiologist that no we generally wouldn't do an NG tube unless the child was already inpatient. I did discuss it with his doctor and it sounded like we were going to shoot for it except we discussed putting the NG tube in while he was sedated for his hernia surgeries. But then I wrote her back and said if they give him narcotics in the operating room he will probably throw up when he wakes up, so maybe that's not a good idea. She never got back to me, he got sick and surgery got postponed until next month anyway. So we've been in a holding pattern.

I guess the short story is yeah they would probably do an NG tube for him. But he would likely have to be sedated for the NG tube then woken up. And his elbows straightened till contrast inserted or he'd yank it out. Or, not sedated, he'd need to be held down by 3-4 people plus 1 to insert the ng tube - I'm not kidding or exaggerating. He's like tiny super squid. The thing I don't like about that idea is he has some malunion in his sternum from previous cardiac surgery- I don't like the idea of him fighting that hard with that much counter resistance. Plus it's just traumatic.
 

Maya142

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They can give anti-nausea meds if they know in advance about the NG tube. They can also use non-opioid methods to control pain - sometimes they can do a nerve block which can be even more effective than opioids. IV Ketamine is another option. Post-op nausea is common so I’m sure you could find a way if you work with the anesthesiologist. My daughter had major jaw surgery and they did not want her throwing up after it, so the anesthesiologist said she would take certain precautions to control nausea.

But honestly, I think doing two separate EGDs might be less traumatic. He wouldn’t have to be restrained or held down. But it would mean sedation twice of course. Unless they could coordinate and place the dummy pillcam during the hernia surgery? And if he passes that, you could then do another EGD for the pillcam.
 
I'm going to ask about the dummy cam...
Can he swallow pills? If it's the size of pillcam, it's big. I wasn't clear on if Maya is saying to do that under sedation too. Have not heard of that. ETA OK I re-read and I see she meant under sedation. I would get a second opinion from a GI doctor who works with kids with disabilities before considering that. That's a lot of sedation if it can't be placed during an already scheduled surgery like the hernia surgery. It may not be worth 2 separate EGDs. I would weigh the pros and cons of med trials based on what you do know along with pros and cons of more sedation and other issues once you do pillcam.
 
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No no he can't swllow pills, but if they have dummy cams they could probably put one in during hernia surgery. So how does the dummy cam work? It works its way through the digestive system but on the slim chance that it gets stuck somewhere it will eventually just dissolve?
 
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my little penguin

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Dummy pill is the same size but dissolves if it gets stuck
They placed Ds pill cam -real version twice
During egd in the duodenum
He has slow gastric emptying
So swallowing the pill cam may have resulted in no video other than the stomach 😂
 

Maya142

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Yes, I meant having it placed during the hernia surgery - usually they place it in the duodenum. My daughter actually has Gastroparesis (delayed gastric emptying) and so when we did the pillcam (and she was a teen so she swallowed the pill easily) it stayed in her stomach for 3 hours! So we didn’t get as much info about her small bowel as we would have liked (she had not been diagnosed with gastroparesis when we did the pillcam, which is why she swallowed it and it wasn’t placed during an EGD).

It would dissolve if it gets stuck. It would mean sedation twice but if it can be done during the hernia surgery, then it would mean one extra sedation. Which is what you’d do anyway if you put in the NG tube for the CTE. This way just seems less traumatic to me.
 
Yes, I meant having it placed during the hernia surgery - usually they place it in the duodenum. My daughter actually has Gastroparesis (delayed gastric emptying) and so when we did the pillcam (and she was a teen so she swallowed the pill easily) it stayed in her stomach for 3 hours! So we didn’t get as much info about her small bowel as we would have liked (she had not been diagnosed with gastroparesis when we did the pillcam, which is why she swallowed it and it wasn’t placed during an EGD).

It would dissolve if it gets stuck. It would mean sedation twice but if it can be done during the hernia surgery, then it would mean one extra sedation. Which is what you’d do anyway if you put in the NG tube for the CTE. This way just seems less traumatic to me.

Placing the dummypill during the hernia surgery sounds ideal. Can they do the SIBO testing during hernia surgery too? That would be more reliable the test kit and easier and then you would know if antibiotics should be part of his treatment protocol.
 
Okay so sibo testing is... Biopsy from an EGD?

Those are actually two really good ideas that I'm going to bring up on Monday thank you so much
 

Maya142

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Staff member
There are two types of SIBO tests:
  • Breath testing. This type of noninvasive test measures the amount of hydrogen or methane that you breathe out after drinking a mixture of glucose and water. A rapid rise in exhaled hydrogen or methane may indicate bacterial overgrowth in your small intestine. Although widely available, breath testing is less specific than other types of tests for diagnosing bacterial overgrowth.
  • Small intestine aspirate and fluid culture. This is currently the gold standard test for bacterial overgrowth. To obtain the fluid sample, doctors pass a long, flexible tube (endoscope) down your throat and through your upper digestive tract to your small intestine. A sample of intestinal fluid is withdrawn and then tested in a laboratory for the growth of bacteria.
 
We have a plan!!

I asked about the dummy pill cam...she said they can do that! So mid Nov he will have hernia surgery ..gonna get a lot of labs run while he is in the OR...and she will do an EGD, any biopsies, possibly the aspiration for SIBO, insert the dummy pill cam. Then, providing that passes without a hitch they will schedule a sedation to put the real pill cam in and also insert an NG tube...then wake him up, not sure how long we will have to wait but then get the oral contrast in, he'll already have an IV for the IV contrast.... and then hopefully get him a quick CTE.

In theory this all sounds great!
 

Maya142

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That's great!! Hopefully that will give you some answers. I know it's sedation one extra time, but hopefully it will give you some clear info on if he has IBD, SIBO or something else. I hope the CTE is quick and he's still sleepy enough that it's not too traumatic. I can't even imagine how hard this is with a child who can't fully understand the procedures. My daughter was a teen and that was hard enough and she understood the need for everything.

Sending hugs and so glad you have a real plan!!
 
Thank you so much!!

So the one thing I started getting curious about is how long they would have to wait between inserting the pill cam and administering oral contrast.... Providing we get to that point which I hope we do!
 

my little penguin

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Pill cam needs to travel
It takes about 6 hours to get past the terminal illeum and walking helps
Get the camera to move
They have to wear a belt around the waist the whole time

not sure if they have to wait till it’s done to administer contrast ….

sleepy kiddo from anesthesia and walking is difficult
Even when Ds was 9 or 10
Hugs 🤗
 
Re: pillcam. Is your son good about not touching buttons, playing with things, pulling things off of him when told? For the pillcam I think my son had sensors attached to his body. He wore the recorder around his neck like a long necklace or perhaps as a long crossbody purse (not as a belt) and if I recall it has lots of wires. I recall he was told not to fiddle with anything. It's tempting because I think you can actually push a button and see the images as it moves through you with the device, but we were told that uses up more battery time. Also, even when he goes to the bathroom he must not take it off and he can't get it wet when washing hands. You will need to check it every 20 minutes or so to make sure the light indicates it is recording.

No idea how long they would need to wait to administer oral contrast, but I know there is variability in how quickly it passes. Our son was on the quicker side. He passed it as soon as we got home from returning the device to the hospital so maybe 9 hours after swallowing it. There are people where it takes several days or longer.
 
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Um...no. When the day comes it's going to be a long stretch of constant monitoring. The plan is already changing. I think they need some time before he can have oral contrast...but I'm trying to get clarification because some of our messages are getting confusing. Stay tuned!
 
Um...no. When the day comes it's going to be a long stretch of constant monitoring. The plan is already changing. I think they need some time before he can have oral contrast...but I'm trying to get clarification because some of our messages are getting confusing. Stay tuned!
If he would have trouble with having censors on and he would have trouble refraining from pulling the wires and buttons I would discuss whether it is still worthwhile. He could potentially damage the device and all that effort would be for nothing because you can't get the images. I don't mean to be a Debbie Downer, but just wanted to give you some things to consider before going through all this. The recording session is usually 8 hours. Since they are placing it during sedation I assume the recording time is decreased to maybe 5 or 6 hours? Could you monitor him for that long and ensure he doesn't pull anything off? Censors can be put back on, but you want to make sure nothing gets damaged.
 

my little penguin

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I think it depends on the type of hospital the pill cam is done at
My kiddos was done at a childrens hospital so belt was simply to wear -no extra wires
But all of their tests -mri /ct etc were geared towards making everything as easy for children as possible

@Stressedmom your child was a teenager and at an adult hospital correct ?
That is probably the difference
And extra wires etc …

and time to wear it for a small child (smaller intestine than adult was 6 hours max after that the pill cam stops recording

@autumn77
Please check with your hospital
Ours was not that complicated really
Easy except for moving
 
I think it depends on the type of hospital the pill cam is done at
My kiddos was done at a childrens hospital so belt was simply to wear -no extra wires
But all of their tests -mri /ct etc were geared towards making everything as easy for children as possible

@Stressedmom your child was a teenager and at an adult hospital correct ?
That is probably the difference
And extra wires etc …
Our former pediatric GI only worked at a adult hospital. We switched to a different practice and this was at a children's hospital. Yes, our son is a teen. It was easy for him to refrain from playing with anything, but even for him it was a little tempting knowing there was something he could press and see the actual images. He has special needs and when he was a lot younger and had more sensory issues, I don't think he would have been able to control his impulses as much, especially with having sensors attached. He loved seeing how machines worked and would have been taking it out of the pouch, pressing anything and pulling. Plus, if we had told him not to get it wet, curiosity might have gotten the best of him. I could be wrong about the wires. Even though it was only about 6 weeks ago, I only remember well the big things like they did let us watch the images as it went down his esophagus because they had to ensure it made it through. That part was amazing and our son enjoyed it!

I would ask about the device and judge for yourself if your son could handle it. Maybe they can even show you what it looks like and show you the censors, etc? They tape them on well. My child was impulsive when younger, yours may not be.

ETA: Some clinicians are more savy to special needs than other, but unfortunately, unless you are a top hospital you can't always assume people are well trained regarding special needs and even there it may vary. You have to advocate for your child's particular needs. There is basically one GI doctor in the country who is considered an expert on GI issues and SN which says a lot. Others work with special needs, but don't always have the same knowledge base.
 
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Yes I can ask to see the device and how it hooks up. I think he would not be happy but he would finally conceive if I was steen about it. And with constant monitoring I don't see it being an issue about getting broken.

I think they want to wait 24 hours after the pill cam goes in before doing the CTE so I don't think he would keep the NG tube in that long... It only takes a split second for him to yank it even with his elbows straightened I think as he wakes up more he's going to get more agitated about it. So we're still trying to figure that out because if he has to have clears and a bow clean out the day before the pill cam goes in... Then wait 24 hours before the CTE and have diet restrictions before that I think they're going to need to have him inpatient with IV fluids between the two exams because of his history of acidosis with fasting. So the perfect plan is still being formed.

In the meantime I believe we are still going to go ahead with the dummy cam and her new surgery next month so yay one step at a time...
 
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