New possible IBD in 3 year old

[Jessrexx]

My head is spinning and I don't know where to start. My some is almost four and we have been dealing with GI issues for about two years now. We first noticed that he was chronically having diarrhea. He was also waking up through the night, at times up for an hour or so. He never complained of anything, so we thought he was just the devil child. Saw a GI doc has a bit of a workup sending blood and stool of for various things. EGD and sigmoidoscopy unremarkable. I tried a gluten free diet and the diarrhea went away pretty much and he started sleeping through the night. Yeah problem solved. Not celiac but maybe an allergy. His height and started to drop off before and then picked back up on the diet.
Fast forward to last month, after accidentally getting gluten here and there (because he is three and it's impossible!) I noticed some blood when I wiped him. I ignored it for a while. I thought it was a fluke. But then it go worse. And it would see it on the stool. The GI doc thought it was a fissure so we did mineral oil (although he is never constipated). Just never went away. Finally had a scope last week, full colonoscopy. They didn't do another EGD, but I do now wish they would have. They didn't see anything. I called today for the pathology and of course his doc is away until Monday. I had to speak with another doc. His path report came back as "focal active colitis" in the cecum and ascending colon. He was bleeding pretty bad this morning. She said she wants to work him up for infectious disease which I don't honk it could be but an willing to do whatever. But she said she thinks it may be an IBD. I have family history which I guess makes it more likely. My husband and I are pretty upset and shaken. I know he will be OK and WE will be OK, but it's scary. Especially now that we have to go down a long road of diagnosis befor anything even starts.
Question - what was diagnosis like for your little ones?
Also, anyone else have Focal active colitis on the path report.
She did say the good news if it is IBD its in really really early stage.

One more thing - he is constantly clearing his throat. I thought it was maybe a tic. Now he says he feels like there is something in there. Could it be related?

 

[Catherine]

Welcome to the forum. Sorry you had to find us.

There are parents with children your son age on the forum.

What country are you in as each country medical system is slightly different.

 

[Lady Organic]

Hi and welcome. sorry for your little guy.
about the throat, ask the doctor to look inside. If unconclusive ask a referral to Ear nose throat doctor.
I have chronic granular pharyngitis since 6 months now. we are still investigating the cause (ruled out GERD so far), but with the crohns, the ENT dr said I am more vulnerable to inflammation of oral cavity, well honestly, I can say my whole body is vulnerable to inflammation :thumbdown:.

about diet, has your son stopped eating gluten again?, if so since when, no improvement this time?

 

[Jessrexx]

We are in Maryland in the U.S. I am really in a good position, I actually work in the Pediatric Post Anesthesia Unit at Johns Hopkins. So as soon as we started having the initial problems I knew riht away which GI doc i wanted to see. We get a ton of kids everyday that have EGDs and colonoscopies and have seen young kids get diagnosed. I also have a great primary care doc that has always taken me very seriously. I actually worked with him when he was a resident back in the day before we both had kids. So I am really blessed there.

It's just odd for me, I don't really feel like he looks that sick. I was kind of surprised of the potential for IBD. But I am sure now when he was little he was waking up at night because of pain.
He is back to gluten free. We never really took him off, it was just a time or two of having it because it's hard to get other people to understand. He doesn't have diarrhea as long as he is not eating gluten for the most part. He has vomited randomly on occasion.
I will definitely have them check out his throat.
Back to the scope - anyone have experience with the focal active colitis. If he does have IBD is it just really early stage maybe??

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear about your little guy. My son was dx'd 2 yrs ago with Crohn's, so no experience here with focal active colitis. My son became ill quite quickly and was dx'd quickly too. But it like you are in really good hands though, so that is one big positive. The unfortunate thing about IBD is it can simmer away with little symptoms. So, getting a solid dx and getting him on a treatment plan is better done sooner than later. Take care!

 

[Tesscorm]

Welcome to the forum but, I am also sorry you've had to find us.

I'd try not to preoccupy yourself too much with 'early stage, mild, moderate, severe', etc. From what I've read on the forum, mild can turn moderate or severe quite quickly. But, I don't want to scare you, mild can also stay 'mild' for quite a while - just that there are no guarantees and you do need to stay on top of it. My son has not had many complications but, still, I've never asked if he had mild, moderate, severe... if told mild, I didn't want to become complacent (nor my son) and, if told severe, I didn't want either of us to have that extra worry since I was already doing as much as I could possibly do to manage it.

So, early stage or not, you do want to treat it the same, or at the very least, have your son monitored closely. It's great that you are able to access assistance and you already have some great doctors!

I can't answer your question re focal active colitis specifically. But, if you look through the Parents forum, going back a page or two, I do remember there have recently been some postings re IBD in younger children. Probably won't answer your specific question but you will likely find some additional information.

There are lots of very knowledgeable and supportive members here - it's often overwhelming when diagnosis is new, don't hesitate to ask questions! :ghug:

I hope the testing gives you a clear path forward! :ghug:

 

[Lady Organic]

I just found this presentation that could interest you:
http://www2.massgeneral.org/pathology/hms/GI13/Mon/07 Non-IBD Colitis Dr Lauwers.pdf

 

[Mr chicken]

Also suggest getting a second opinion
Very early onset ibd is its own set of unique issues
Mostly genetic and tends to be treated differently than older kids
Chop has a good program for veo ibd as well as CHP and Bch
They are the top three pediatric Gi programs in the U.S.

Fresh set of eyes are a good thing and most Gi welcome them.

DS had a normal looking scope at dx but the biopsies showed crohns

 

[Pilgrim]

My daughter had her scopes and diagnosis at age 3 also, but her scopes showed active inflammation and biopsies showed granulomas so we had a different presentation with her than you have with your son.

I think the little ones get used to pain quickly and so it is hard to know how long they have been suffering symptoms. Like we have, you may find yourself amazed at the patience your child has with the symptoms of the disease.

Our daughter also doesn't look sick, which delayed her scopes many months unfortunately. Not every child with IBD looks small or thin, because there are different areas of the GI tract where the disease can be active which affect nutrient loss more or less.

Not sure about the throat clearing. Hugs to you while your family adjusts to the possibility.

 

[Tesscorm]

Oh, I'd forgotten about the throat clearing... Although my son was almost 17 when diagnosed, he's had throat clearing (and deep 'clearing' cough) his entire life! When he was younger, I'd mention it to his dr but as everything (lungs, infections, etc.) were always clear, it was never looked at further. I don't know if it's related to crohns but I have heard/read about "crohns' cough" so there may be a connection. FWIW, he is in remission but periodically still has the throat clearing.

As for feeling something of something 'there'... Just before diagnosis, when other symptoms were also appearing, he felt there was something lower down in his throat/mid chest area. He felt it when he was swallowing food. This went away with treatment so may have been related to some acid reflux related to crohns??

 

[Jessrexx]

Thanks everyone for the words of wisdom.
Couple questions- what is VEO IBD?
Also, the blood is definitely on and off some days he has it and some days he doesn't. Is that normal? Yesterday is was running down his leg. Today is see nothing. Maybe microscopic?
Got all of our labs today and sent stool for calprotectin and cultures. Just in case it is infectious and not IBD. We shall see. I don't think I will be real to me until we get a diagnosis which I know will take a long time.

 

[crohnsinct]

Very early onset IBD.

Not sure about the on and off blood. When my girls starts bleeding I is pretty much constant.

Sending lots of patient vibes your way. Waiting stinks...scope biopsies should be back fast but Fecal calprotectin can take a week to week and a half:ymad:

 

[Mr chicken]

DS has ion and off blood but he is strange in so many many ways

Very early onset ibd is for kids dx at less than 6 extremely rare
Early onset ibd is less than 10 years kinda rare
Most kids are dx between 15-20 years old .

 

[Farmwife]

Hi and welcome
Yes!!!!!!!!!!!!! My now 6 year old (dx at 3) had focal active colitis on her path report!!!!!!
Grace is also considered early stages or onset. The first 2 scopes showed damage at the microscopic level only!
Her 3 rd showed a little more at the surface but she was considered to be in remission at that point.

Here's the thing, if it's ibd even at the early stages or microscopic level it's still important to treat it.

My girl also in this time frame was dx with juvenile arthritis.
She is now on Remicade, Mtx and sulfasalazine to keep both diseases at bay.

Did you path report mention anything about Eosinphils?

 

[Jessrexx]

No EOS seen on the path report. I remember asking specifically because when he first was having diarrhea they worried about eosinophilic esophagitis/gastritis.
Also got his bloodworm back today. Which brings me to another question - his labs were stone cold normal. CRP and ESR totally normal. Even his hgb was normal. Wouldn't I expect to see something if he really has IBD? Or am I grasping for straws?
That being said, I would think that if he had an infection which is the other angle they are going for, he would have an increase in WBCs and such

Hi and welcome
Yes!!!!!!!!!!!!! My now 6 year old (dx at 3) had focal active colitis on her path report!!!!!!
Grace is also considered early stages or onset. The first 2 scopes showed damage at the microscopic level only!
Her 3 rd showed a little more at the surface but she was considered to be in remission at that point.

Here's the thing, if it's ibd even at the early stages or microscopic level it's still important to treat it.

My girl also in this time frame was dx with juvenile arthritis.
She is now on Remicade, Mtx and sulfasalazine to keep both diseases at bay.

Did you path report mention anything about Eosinphils?

 

[Mr chicken]

DS always always has normal bloodwork which is why it took 8 months to get a scope since he didn't have diarrhea or bloody stool just constipation
But his biopsies should lots of granulomas

 

[Jessrexx]

I know they are going to wait for the stool cultures to come
Back. I just can't imagine it's a gastro infection. Again, we went down this road before. And he isn't having diarrhea like he is sick. And it certainly isn't C Diff - I know that smell!

 

[DanceMom]

Has he had any immune testing done? My daughter's basic labs used to always be normal too and her ESR and CRP still are. Many things present like IBD and it can be difficult to differentiate.

 

[DustyKat]

Unfortunately it is not uncommon for bloods to be normal in children. Have Iron stores been done? Sometimes Ferritin can be a back door way of picking up inflammation where other blood tests fail.

Dusty. xxx

 

[Pilgrim]

I second what Dusty said about Ferritin.

H's labs were also normal before diagnosis when she was bleeding off and on (but never in large amounts). But eventually, after months of it, the ESR went up. CRP never did go up. Iron and Ferritin low.

 

[Jessrexx]

Ok. I will ask about iron levels too.
Still waiting for the fecal calprotectin and cultures. We shall see. I have been told the calprotectin is pretty reliable.

 

[Farmwife]

Yes, fc stool test can be reliable but not always.:yfaint:
Not only does Grace has normal labs she had normal fc stool test.
Now your asking how do we even know Grace has any issues....
Because her scopes show different.

Very little makes sense with these little ones.:confused2:

I'm glad to hear about no Eosinphils. That was Grace's original dx, egid's.

 

[RexMom]

Welcome and so sorry you're here. My son was dx 1 month after turning 3 (turned 3 this past may and dx in june). His symptoms started early in 2015 although looking back I do wonder if something was brewing much longer. I am not sure his stools ever became normal from infancy.

He presented with:
-On and off blood (pedi dismissed as a fissure)
-very very soft stool ranging from wet sand to liquid poop
-waking up at night after being a great sleeper (we blamed this on his new sibling born in March)
-weight loss, no growth
-no energy to play, seemed depressed, anti-social, clung to me 24/7
-no appetite, became an extremely picky eater (we blamed on his age)
-severe anemia (found at the 3 yr annual and from then, I started to figure it all out)


I also suggest a second opinion. I ended up swtching to the new dr bc my first had no idea how to treat my son. Others here will also suggest an immunologist to rule out an immune system problem as the primary issue bc it is common in very early onset IBD.

My son is dx as IBD unspecified as he has characteristics of both colitis and crohns. We did all the stool samples, bloodwork, both scopes, and the barium xrays. We are almost done weaning the steroid and he is doing very well (fingers crossed). I am still totally new to this but I wanted to share my story so you know you're not alone. Those first few weeks after I found out was the worst I have ever felt.

Hang in there and I hope the best for your son. :hug: