10 yr old being tested for IBD

[sidoni83]

Hi there - I’ve been posting in parents with children that have IBD - but wanted to get some further insight..my son has been dealing with a few years of mouth ulcers, debilitating stomach pain, Constant loose stools, failure to thrive, irritated eyes and skin..and just recently started complaining of painful legs and a swollen painful index finger?
My pediatrician overlooked the mouth sores and diarrhea but then when he started standing still with growth and weight he started to get concerned (especially since my daughter is 16 months older and has far surpassed him in height and weight)...so we went to Johns Hopkins..he had colonoscopy/endoscopy done last Monday...these were his results...wanting to know if anyone can help me decipher what is going on...just want to see my little guy feel better...thank you so much for any help!!

 

[kiny]

I think your doctor should do the diagnosis instead of a forum. But he has an intact colonic and ileal mucosa. Even in early onset crohn's disease, there is at least the presence of inflammation of small lymphoid follicles, peyer's patches and erosion of the mucose. No I don't think he has crohn's disease at all.

(people with crohn's disease often have mouth ulcers, and so do people without crohn's disease, mouth ulcers are of no diagnostic use)

 

[sidoni83]

I think your doctor should do the diagnosis instead of a forum. But he has an intact colonic and ileal mucosa. Even in early onset crohn's disease, there is at least the presence of inflammation of small lymphoid follicles, peyer's patches and erosion of the mucose. No I don't think he has crohn's disease at all.

(people with crohn's disease often have mouth ulcers, and so do people without crohn's disease, mouth ulcers are of no diagnostic use)

Thank you. Obviously I will be meeting with his doctor as soon as they call me. Just got the pathology today so was looking for feedback if anyone had anything similar until I talk to the doctor. I am not looking for a diagnosis here...just feedback. I am just a worried sick mama wanting my little guy to have some relief..everyone on here has been so helpful and I've learned a lot so thought id ask...

From what I have read there are several people with clear colonoscopies and endoscopies that are diagnosed via capsule endoscopy/MRE which is what his doctor has already ordered..just waiting on the appointment date. Unfortunately his endoscopy is showing something (I wasn't implying Crohn's..I just don't know what it is)...just not sure how to interpret it. I don't think any symptom is a clear diagnosis...including mouth ulcers..just telling the symptoms he has.
Thanks for the feedback! Anyone else?

 

[DustyKat]

Difficult to say based on the results but you are certainly on the right track having the capsule endoscopy/MRE as your next testing.

If IBD is a possibility it is not rare to have anything up to 5 EIM’s (Extra Intestinal Manifestations) for some time prior to diagnosis and the physical presentation of intestinal inflammation.

Re the mouth ulcers, has your son had his Vitamin B12 and Folate levels done? Also has he had Iron Studies done?

 

[sidoni83]

Thank you so much for your reply! We have had blood work and he had some abnormalities (white blood count pretty low/neutrophills low/BUN/Creation Ratio was high and out of normal standards/A/G ratio was off the charts high/and BUN was just out of the high normal limit - that is all I can recall) but I didn't see B12 or Folate. I know his white blood count was really low along with his neutrophils. As far as iron goes - I know they looked at his red blood cells which would show anemia, right? We didn't do an Iron Study though. I will definitely ask my doctor about this.
Physical presentation of intestinal inflammation - is that the symptoms or you mean them physically seeing inflammation on the scopes? I am curious what the capsule endoscopy shows because even with the inflammation in his stomach, plus abnormal cells in his cecum - that wouldn't explain the constant diarrhea - I honestly can't remember the last solid stool he has had. It's just so different than both my daughters. Thank you again for responding - I really appreciate it!

 

[DustyKat]

The journey to getting a diagnosis, whatever that may be, is certainly a very frustrating and emotional one and in many cases is a process of elimination rather than a straight up you have this.

B12 and Folate: if there is a deficiency here it may give a clue to what is causing the persistent mouth ulcers, although a low white cell count could also account for that. It also may point to issues with absorption and then the question is as to why.

Iron Studies: This is the blood test that gives the greatest amount of information as to how iron is carried and stored in the body. If anaemia is present the values will point to a type (see attachment) A normal haemoglobin doesn’t always tell the full story as the body will draw on B12 stores to prop it up. Also it can be a back door way to finding if inflammation is present when other tests don’t indicate it and that will show in raised ferritin levels.

Capsule Endoscopy: Unfortunately the vast majority of the small bowel is unable to be seen by scope so short of going in surgically radiology is the only other option and as a result there will always be limitations as to its accuracy.
As you would know the causes of diarrhoea are many and varied which again makes it as a symptom, along with the others, another piece in the puzzle of eliminating what is not causing it as a way of getting to a diagnosis. If there are physical changes to the bowel, inflammation/scarring, that can affect the body’s to absorb not only the nutrients we receive from our food but also salts and fats and an excess of these in the small bowel can result in chronic diarrhoea.

Yes, I was referring to seeing anatomical changes in the bowel via scope.

I think I saw a thread you started about your son having a normal Faecal Calprotectin and serum inflammatory markers? Although for most they are a reliable tool for showing inflammation it’s not always the case. There is some conjecture that Faecal Calprotectin isn’t as reliable once you start moving away from the large bowel but in our case we haven’t found that to be so.

My main piece of advice would be to keep a daily diary of your son’s symptoms as when you are living this day in and day out it is too hard to remember everything and things start to become ‘normal’ that shouldn’t be. Document things like:
Bowels - how many motions a day. Their consistency (use a Bristol stool chart - see attachment)
Pain - where is it located. What is it like - stabbing, ache, etc. How long did it last. Did you take anything for it, did it work, what didn’t work.
Weight - gaining, losing, maintaining
Food - likes and dislikes. Any food allergies. Any foods that can’t be tolerated.
Appetite - excessive, normal, poor
Physical - active, inactive
Mood - depression, anxiety, memory, lethargy
Any other corresponding symptoms - rashes, eyes, etc
Take the diary with you to every appointment or ED visit you go to. It is hard for health professionals to refute what is in front of them in black and white but it is also a useful tool in tracking trends.

If the labs/clinical results match up with what you are seeing in front you that is good BUT if they don’t then keep doing what you are doing and push for answers and that can go either way - well looking kid/abnormal labs or unwell kid/normal labs.

And above all else good luck! I hope you finds answers soon. xx

 

[my little penguin]

@sidoni83 how you holding up ?

 

[sidoni83]

Hi Little Penguin - Thank you so much for checking up on me! His doctor got us right in for an MRE so we go this Friday. She seems to think he is going to have inflammation in his small intestine too which could be crowns of his stomach and small intestine but she said this just what she is thinking but we need to see what the MRE shows so I dunno.
My little guy is super nervous about it. And honestly as I am reading people talking about it, it makes me nervous for him. It sounds terrible. The stuff they make you drink being gross plus making you so sick. He is sick all the time as it is, it just makes me so nervous how sick that stuff will make him . Also I was reading if you don't flush yourself out really well it could harden. Ugh. I know I need to be careful what I read but this was all from people on this forum and they always seem trustworthy and helpful.
Thank you again for checking on me! I hope you and your son are doing well!

 

[my little penguin]

So most kiddie hospitals use breeza to drink for MRE now
Much better than the thick barium chalk stuff they used to use and add sugar free kool aid too
Taste like thicker sprite per Ds not too bad
You drink one bottle then a second one 15 minutes later and sometimes a third 15 minutes later depending on size of the kid
You lay on your left side for 15-30 minutes so it sits and coats the intestine
They give an iv
Half way through they inject the iv with glycogen abd gallulidium at the same time
It’s cold and makes the kid feel like he may pee
And can cause vomiting
The MRE room is very cold
They give blankets and head phones since it’s loud
The kid lays on his belly the whole time with arms above your head
Parents stay in the mri room with them
When the kid is done they leave
And drink slightly more water
Ds has constipation as part of crohns -weird I know
Stool will look white that is normal

Ds has diarrhea and vomiting but he also gets gets itchy rashes and hives( anaphylactic reaction) so no MRE or cte for him -yes he reacted to both and radiology will not sign off on him getting any scans
Mild reactions (just a rash ) gets steriods by iv 13 hours prior

Ds also has life threatening food allergies ,bee allergies and has had anaphylactic /allergic reactions to other meds so not a shock .

his body doesn’t like any extras

most kids are fine with it
Good luck

 

[WindingRs]

To make you feel a bit better, my son did a MRE couple months ago. They gave him a banana flavored drink. He didn’t mind it at all, and he didn’t have any complaints during the procedure.
Best of luck!

 

[sidoni83]

Thank you MLP and WindingRS!! I actually read both of your messages to my little guy, and that helped tremendously - he is feeling much better about going tomorrow. I think this is all so scary because we don't personally know anyone that has any of the issues he has, so we definitely don't know anyone that has been through all the testing he is having. This helps a lot to know he isn't the only kid out there that is dealing with this stuff!
MLP - our school mascot is a penguin so he was like mom! maybe they go to our school . I told him no but he still liked the name. Im sorry to hear about all of the life threatening allergies - I know as a mama that has to be so scary at first. We have many friends that have kids with life threatening allergies, and my heart always goes out to them. Thank you for painting the whole picture of what this experience will be like for him. In true fashion I do have a few more questions .
- I left a message for his doctor - so he has to go 2hours beforehand because they said since he had scopes within 8 weeks of the MRE that he has to have an XRAY done to make sure they didn't leave any metal inside - normal? I knew normally it was an hour before to give them time to drink the 3 drinks so I originally planned on 1:30. It's fine - just curious.
- Also, his test is not until 2:30 so we have to get there at 12:30 pm - They were very vague in the instructions - no eating 6 hours prior to... - does this mean prior to when we have to be there (12:30) or prior to the test time (2:30). So in theory this would allow him to have a light breakfast that morning, or no? His least favorite part of the scopes is the fasting so was just curious. And I know I should always check with the doctor so I am waiting for their response, but just was curious your opinion!
- When the pathology comes back from scopes biopsies - is the pathologist the one that usually writes the diagnosis of Crohn's if they see something on biopsies? I keep reading people that get results and it says expected Crohn's, Colitis, or Iletus, etc. - with my son, it just said chronic mild inflammation and rare cells that could mean mucosal damage so I was just curious.
-Also, you, along with several other people, have suggested always getting a second opinion - since we live in MD, so fairly close to CHOP I was thinking of attempting to get a second opinion. Would this mean he would have to go through all of the tests all over again? Even with the recent pathology they didn't have an answer to the rare cells seen in his cecum just that it could be due to mucosal damage, and something is telling me to investigate - but this would mean he would need biopsies done again, I'm assuming? Also, if I could, I would like to first start by sending them his records to get their opinion without having to actually go there - is this a possibility?
- I know these are two totally different tests so it is comparing apples to oranges, BUT is the MRE just as good at detecting small intestines Crohn's as a capsule endoscopy? I see so many saying they had every test under the sun including MRE and it wasn't until the capsule endoscopy that detected Crohn's in small intestine. His doctor was saying that a lot of times patients will have mild chronic inflammation in the stomach and then show inflammation in the small intestines indicative of Crohn's, which she believes he is going to show - then why didn't she just jump to the capsule endoscopy instead of doing the MRE first?

Thank you so so so much for all of your help! I apologize for so many questions.

 

[Jo-mom]

Good luck to you and your son. I hope it goes well. Hugs.

 

[sidoni83]

Good luck to you and your son. I hope it goes well. Hugs.

Thank you so much Jo-mom!

 

[WindingRs]

My heart is with both of you today, sidoni. I hope it goes well. My son was hospitalized at the time. They did his endoscopy, colonoscopy, MRE and MRIs in a matter a few days. I don’t remember exactly if they did the scopes first or the MRE, but I am sure all the MRIs happened after his scopes. And no x-ray before the MRI. Now that you mentioned, I feel it’s better to be safe and make sure no metal is inside. These machines have very strong magnetic fields. My son had fun googling the strength of the magnetic field in MRI machines and comparing it with earth magnetic field.

 

[my little penguin]

Never heard of X-ray due to scopes
Ds always had scopes and then MRE sometimes back to back days
No xrays
I know as a parent going in they will X-ray parents
They have gotten stricter about metal though
At our old hospital
Kids and parents were only permitted hospital issued clothing

as far as fasting depends on Gi
Remember they are trying to get. Good image
The more empty things are the better
Fasting from midnight is standard
Ds used to do scopes one day and MRE next day so he was clean
Gummy vitamins hang out in the intestines for a long time

as far as second opinion at chop and testing
They review your current tests and pathology slides
And all other records and test reports
They don’t request new tests if yours were just done
Can’t say whether they would do virtual visit only or require in person

easy to find and see them
They have discounts at hotels close by if needed

pathology sometimes has to see non caseating granulomas to check the crohns box

MRE has to be done prior to capsule endoscopy for safety reasons
They need to find out whether there are any strictures or narrowing that would prevent the pill cam from passing through the intestines
They don’t want it to get stuck then it’s surgery

MRE can show thickening which can represent crohns

hope that helps

 

[sidoni83]

My heart is with both of you today, sidoni. I hope it goes well. My son was hospitalized at the time. They did his endoscopy, colonoscopy, MRE and MRIs in a matter a few days. I don’t remember exactly if they did the scopes first or the MRE, but I am sure all the MRIs happened after his scopes. And no x-ray before the MRI. Now that you mentioned, I feel it’s better to be safe and make sure no metal is inside. These machines have very strong magnetic fields. My son had fun googling the strength of the magnetic field in MRI machines and comparing it with earth magnetic field.

Thank you so much WindingRs!! That is actually a great idea - to have him google the magnetic field. He is so into science so maybe that would make him excited for it! You guys are so awesome always! My heart goes out to you to go through that whirlwind of having to get all those tests back to back while your son is being hospitalized ...I can't imagine how scary that must have been. Hugs!!

 

[sidoni83]

Never heard of X-ray due to scopes
Ds always had scopes and then MRE sometimes back to back days
No xrays
I know as a parent going in they will X-ray parents
They have gotten stricter about metal though
At our old hospital
Kids and parents were only permitted hospital issued clothing

as far as fasting depends on Gi
Remember they are trying to get. Good image
The more empty things are the better
Fasting from midnight is standard
Ds used to do scopes one day and MRE next day so he was clean
Gummy vitamins hang out in the intestines for a long time

as far as second opinion at chop and testing
They review your current tests and pathology slides
And all other records and test reports
They don’t request new tests if yours were just done
Can’t say whether they would do virtual visit only or require in person

easy to find and see them
They have discounts at hotels close by if needed

pathology sometimes has to see non caseating granulomas to check the crohns box

MRE has to be done prior to capsule endoscopy for safety reasons
They need to find out whether there are any strictures or narrowing that would prevent the pill cam from passing through the intestines
They don’t want it to get stuck then it’s surgery

MRE can show thickening which can represent crohns

hope that helps

Woah! So the parents have to be x-rayed to be allowed in the room?? They never mentioned that - they should have! I wonder if because of COVID they will even allow either my husband or me into the room with him. They only let us go so far with the scopes - we weren't permitted to sit with him before they put him to sleep which we used to be able to do.

We travel A LOT especially now since my husband is working from home and the kids are doing virtual - we want the kids to see as much of the country as possible so I am not too concerned with the actual trip up there...I was only wondering about sending the records electronically because I have seen several parents mention they have done it for evaluation...he gets anxiety every time we step foot in a hospital (I know he has to get over this...we are working on it) so I just figured if I could electrically send everything over and they would review then maybe that would save us at least 1 visit anyway until they tell us they need him to be seen there. Ill check it out either way!

And that makes so much sense about making sure it is safe to do the capsule. I can't remember - did your son's MRE show anything?

Thank you again!!!

 

[my little penguin]

So at chop second opinion -please request veo ibd clinic second opinion - chop will have you sign a form and they request all the medical records , images , and biopsy slides- they review them as a team
If he was under 8 at symptoms /dx they will schedule with veo ibd clinic
Once the team reviews then they will determine if he can get an appt not until then
No wasted trip
Team has social workers /genetics /nutrition/immunology and Gi who sees the kiddo all at once
You stay in one room and they come in one after another
Very efficient so one appt to see 6 to 8 medical professionals-makes it

MRE for ds has shown mild thickening at ti junction consistent with crohns twice now

Nothing on capsule
Anytime

non caseating granulomas on first scope biopsies consistent with crohns

 

[my little penguin]

https://www.chop.edu/centers-progra...zGrjyGA3FVEfvjzh8GrYEwIG2hDOG0zBoC5LMQAvD_BwE

 

[my little penguin]

How did the scan go today ??

 

[sidoni83]

Aw thank you for thinking of us!
He did pretty well. He didn’t mind the taste of the drink at all but it went right through him and made him pretty sick but honestly I feel like everything makes him sick these days. The meds that stop bowel movement made him super sick too but that was vomiting...We are actually on our way home now (my husband is driving!) and we’ve had to pull over a few times for him to poop (sorry TMI but truth ) 2 more hours to go...
He said he definitely prefers the scopes but all in all it wasn’t bad!

 

[my little penguin]

Hope you made it home safely
Be sure to tell the Gi about reacting to the gallulidium or glycogen (vomiting is reacting )
Hope you get answers soon

 

[sidoni83]

Thank you LP. I will definitely mention it his GI whenever I actually hear from her. She is a hard one to get ahold of. I called to see if they had gotten his results from MRE and a nurse wrote me an email just saying his MRE results were normal. I was hoping to see the actual results so hopefully they post on Mychart. Im just curious. While I'm happy they didn't find anything wrong, I feel like we are back to square one. So basically he has had scopes and MRE and the only thing they found was mild chronic inflammation throughout his stomach (negative for HPylori), his enzymes were low for Lactase 8.8 L with a normal range being 15.0-45.5, and some inflammation in his esophagus. I don't know where to go from here. He still isn't feeling well. He has been the same height and weight for a year...everyone we know including his own younger sister towers over him now...its like they are all growing and time is standing still for him. There has to be something causing this but then another part of me thinks they would've seen SOMETHING on the scopes or MRE if there was something seriously wrong. I set up a telemed with the GI so I guess we will see what she says .

Thank you again to everyone for all of the helpful information!!

 

[my little penguin]

Set up a second opinion at CHOP
See what the Gi says about lactose intolerance and other test results
Has he been lactose free ?
Tried FODMAPS diet ?
Seen endocrinologist since he isn’t growing
Given your filling out Gi that would be a good place to visit
Formula (that’s lactose free -orgain vegan is ) most of the others otc state low lactose but still have milk in them

 

[sidoni83]

So they did just post the results. It does say everything normal pretty much but it said motion artifact limited entire evaluation. I am going to assume this means he moved around too much, which was mainly because he was dry heaving and vomiting. I asked the nurse if they could give him some time because he felt so sick but she said she needed him to try and stay still. I am guessing if it affected it that much they would've said so; so I guess they got what they needed?

He has telemedicine on October 20...kind of stinks to wait that long but it is what it is. I am guessing she will still want to do the capsule endoscopy but I find it hard to believe they will find anything if the MRE was clear and scopes only showed inflammation in stomach and esophagus. As soon as he does that I will contact CHOP! If this isn't IBD I am wondering if it could be an immune system thing because his white blood cells and neutrophils are always below the normal limit, and even aside from GI stuff, he is ALWAYS sick - when he gets the smallest cold or anything it turns into a super bug and he gets so sick - he got hand foot and mouth one time and he had 32 sores in his mouth - it was terrible.

I did try the lactose free diet for awhile several different times to no avail but like you were saying dairy can hide so I will try and again and be even more strict. He had a really bad day yesterday. His stomach was so crampy he was in tears...I have to see him like that.

 

[my little penguin]

Talk to your Gi
But my lactose intolerant kiddo has to avoid period per Gi
He still has stomach issues (not ibd ) -it is what is

immune disorders are seen by the immunodeficiency clinic (that requires a referral )
https://www.chop.edu/centers-programs/immune-dysregulation-program/about
I would call now since it takes months to get in and you will can send results as they are done

 

[sidoni83]

Okay I will call today. I guess I should start with the GI department and go from there?
what type of issues does your lactose tolerant kiddo have?

Did your son ever have issues with too much movement on the MRE? And do you think it is even worth it to go through with the capsule endoscopy if she asks us (of course we are meeting with the doctor regardless and see what her opinion is but just curious what you think)? Or should I wait and see what CHOP says? Sorry I ask for so much advice. My husband is not as helpful with this stuff because he just doesn't know what to think. And my mom passed away a few years ago which is who I would always have turned to. Plus none of my friends understand what it is like to have a child with health issues so it's just hard. I really appreciate this!

 

[JessicaGrace24]

@sidoni83 I have had issues with too much movement on MRE and so they don't always get a good enough visual of my jejunum which is one of the areas my Crohn's has appeared. They also can't reach the jejunum via any scopes so your GI may very well ask for a capsule endoscopy especially since the places your son did show inflammation was high up in the digestive tract. There are other things that can cause inflammation of the esophagus and stomach and you may want to ask your GI about doing tests for gastroparesis because if there is slow passage of food through the stomach than it may very well cause acid to back up into the esophagus which could cause inflammation. I agree with you that the low white blood cell count and neutrophils should be looked into, especially if they are ongoing issues. Best of luck!

 

[my little penguin]

Some notes on MRE movement which always makes me mad since the techs don’t say anything
They should have stopped if he was vomiting during his MRE /cleaned him up and continued since your child was laying in his belly abd vomiting is a sign of a reaction to the meds . Notify your Gi since radiology is typically bad about letting the Gi know about that one .
Reaction of more than one system is anaphylaxis.
For ds that was vomiting (digestive ) , itching /rash/hives (skin) /swollen ear

We do all tests ordered by the docs especially with a out of the box kiddo
Most will be normal but then your not what if ing later
Agree with gastroparesis testing if Gi thinks he needs it .

As far as waiting for chop
Do testing his current Gi wants
Chop can always review the test results
Vs you seeing chop
Then having them order tests
Then waiting then reviewing
Chop will order some tests but the more info they have the easier it will be to possibly figure out
I do say possibly
Since some kiddos don’t get dx
Symptoms get better managed but ...the why stays a mystery

 

[sidoni83]

Hi Jessica - Thank you so much for your response. When you've had issues with movement on the MRE does it say inconclusive due to movement? His said: impression: Motion artifact limits evaluation. Unremarkable MR enterography. No focal bowel wall thickening, no signs of acute or chronic inflammation, no anatomical bowel stenosis identified. It didn't even detect the inflammation in his stomach or esophagus.
I wrote her an email this week actually asking about the gastroparesis to see what her thoughts are on this.

One other symptom that I forgot to mention but that has been continuous for awhile now is almost like constant hot flashes - I don't know how else to describe its other then he gets SUPER hot for no reason - sometimes his ears and cheeks will be super red too but other times he just looks miserable because he feels so hot so we put ice packs on him. He has had this feeling at night every night before bed for a long time but now over the past several months it happens on and off during the day too. I have no idea if this is related to anything. I keep forgetting to mention to the doctor but will the next time I see her.

Thanks again for your reply!!!

 

[sidoni83]

Some notes on MRE movement which always makes me mad since the techs don’t say anything
They should have stopped if he was vomiting during his MRE /cleaned him up and continued since your child was laying in his belly abd vomiting is a sign of a reaction to the meds . Notify your Gi since radiology is typically bad about letting the Gi know about that one .
Reaction of more than one system is anaphylaxis.
For ds that was vomiting (digestive ) , itching /rash/hives (skin) /swollen ear

We do all tests ordered by the docs especially with a out of the box kiddo
Most will be normal but then your not what if ing later
Agree with gastroparesis testing if Gi thinks he needs it .

As far as waiting for chop
Do testing his current Gi wants
Chop can always review the test results
Vs you seeing chop
Then having them order tests
Then waiting then reviewing
Chop will order some tests but the more info they have the easier it will be to possibly figure out
I do say possibly
Since some kiddos don’t get dx
Symptoms get better managed but ...the why stays a mystery

You know it's funny - it said on his results Intravenous Gadolinium appropriate for body weight was injected uneventfully during the scan. -- I was wondering why they didn't mention that he vomited several times after this was given. And a few times I could see him moving so I asked the tech when she came in if it was okay and she said yes but he is moving quite a bit - so I specifically said please don't let us out of here until you get exactly what you need because I knew he would not want to repeat this test again. So frustrating!!

 

[my little penguin]

We learned the hard way
Ds report said he reacted with itchy skin,rash hives and swollen ear -no mention of vomiting si docs assumed he had a mild reaction
When the next MRE was needed the fellow on call asked -what exactly was his reaction .
They were pre treating with iv steroids for 13 hours prior to the MRE as is protocol for MILD REACTIONS. When the fellow found out in addition to the hives /rash that he vomited the head of radiology was livid . No more gallulidium/glycogen or contrast for ds for mri or ct once they found out .
Which makes mri /ct less than useful for him .