Possible Crohns diagnosis

I am in search of some insight on my 11 yr old son. In August of 2016 he was referred to endocrine for a growth delay and slow weight gain. He had fallen off his growth curve and he hadn’t gained weight in at least a year. His ped had done the basic endocrine labs including IGF-1 and IGF-bp. All labs were normal. She also did a bone age which was normal. Endocrine did some repeat labs in October of 2016 and told us that they wanted to see some weight gain so they could assess his growth better. So fast forward to January 2017, we followed up with endocrine. There was no weight gain and hardly any growth. Again we were told that they needed to see weight gain to further assess his growth. During this time, he also had a follow up with his primary and she decided to do some screening labs for IBD and refer us to gastro. Labs were normal. We got into gastro in February 2017 and they did some further lab tests and gave us two options. Follow up with endo and see if they wanted to do further endocrine testing or do scopes. We followed up with endocrine and they did not want to persue further testing. I called GI and told them that so we decided to go for scopes. Scopes were done in March 2017. They came back a bit concerning. He had moderate esophagitis likely related to reflux since there was no eosinophilia (he has really bad allergies so they were thinking eosinophlic esophagitis) and some mild terminal ileum inflammation with eosinophilia they diagnosed as ileitis. We were told to start omeprazole and follow up in a month and that time they may decide to do a trial of entocort. We went back in April and decided that he hadn’t gained enough weight (1-2 pounds maybe) and started him on entocort. We were told to follow up in 3 months this time. We were to do an 8 week trial with entocort. During this time my son gained weight like crazy. He gained around 7- 10 lbs. In May, we followed up with endocrine and they were happy to see the weight gain and told us to come back in about 6 months to see how his growth was doing with his recent weight gain since it takes a while to grow. We saw GI again in July and they were “curious” about him and how well he responded to the entocort. We were to continue on the omeprazole for another 3 months and wean him off once school was established. We also were told that if his weight started to decline that they may want him back on entocort for another trial. Well we got to the end of August and we went to an appointment with his primary and he had lost about 4 lbs. we called GI and he was put right back on entocort for another 8weeks. So here we are at the end of the 8 weeks and he has gained his weight back and maybe a pound more. He had a follow up with endocrine and his height has now dropped to the lowest percentile he has been at. (12th percentile for height) They repeated a bone age and did thyroid labs and those seemed normal. His bone age did advance as well. We will follow up with them at the end of Feb. So we are going back to GI in a few weeks and I am so nervous we are on the road to a crohns diagnoses. Those words have been tossed around between all of these doctors but we do not have a definitive diagnosis. I talked with his ped today who consulted with endo because we are frustrated and want to know what our plan is. Endo said they want him to see GI again and see what they say about how he responded to the entocort and then relapsed when he was off of it. They want to see if the GI wants further work up at this point. Endo said that if his growth velocity is still not the greatest in February we would consider growth hormone stim testing. His ped told me today that she thinks this is more GI related and that just scares me.
So could this really be crohns? Can he really have no GI symptoms except for heartburn? We did try to take him off the omeprazole and he had heartburn again even when he was taking the famotidine. I guess he does have occasional fatigue and he has had some mouth sores recently that I will make sure I mention to GI. He also has not the greatest appetite at times. I am just so frustrated that we have been dealing with this for so long and I feel like all we are doing if watching and waiting. Does anyone have any insight on this? I know the pathology report suggested continued surveillance and I think they plan to re-scope him at some point but how often do they scope kids? I cannot wait another year without some kind of answer. I need to know what is going on.

Big hugs
Yes you can have no symptoms and have Crohns
Big red flag is weight loss and lack of growth
Kids are growing machines
The fact he grew on entocort which is a steriod but mainly targets the GI tract
Makes things more GI wise

Most pathologist won't check the Crohns box until the see granulomas
Only 30 % of Crohns patients have granulomas

Have they done an MRE and pillcam ?
Both are needed to check for inflammation in the GI tract (small intestine ) where the scope can't reach .

You can have a scope every few months

But asking for imaging (MRE/pillcam ) may help
Get a second opinion. At a top pediatric ibd university hospital

In the US
That's
Children's of Philadelphia
Boston children's
Children's of Cincinnati


They will do records review
Basically look at all his files and pathology slides
It you can actually take him there
Most Insist on imaging

Just treating on and off with steroids
Is not ideal


Ds was dx at age 7
He is now almost 14
No diarrhea
Just constipation
Rectal prolapse at the end which got him a scope
Belly pain
Weight stalled then slow weight loss
Normal bloods
Height stalked after dx

ileum is the most common place for inflammation for Crohns
Did the GI give a reason why the ileum was infkamed ?

Please get a second opinion quickly

They don't treat kids with Crohns with growth hormones
Since they just need the disease under control to grow


Hugs

The GI has only said that it could be the onset of IBD or even prep related, which I find hard to believe. He hasn’t grown much height wise but there was a definite weight gain. I will see what GI says in a few weeks and then look into a second opinion since we have more evidence of the steroid working. We are not close to any of those hospitals, unfortunately. I know he is seeing a pretty great doctor but probably not the best in our state.

They have not done any imaging but I’m thinking they may consider it next time we go. I am definitely going in with a new perspective this time.
I am wondering if the reason he’s not growing is because he is only being treated so briefly and he has to gain weight before he will grow. I am thinking that if this is truly what we are dealing with, we may need to think of another option for growth. Last time the GI did notice a bit of growth deceleration but they only have half a year to look at his growth from their clinic.

You don't have to be close
You call the place of choice
Ask for a records review
Talk to your Medical records dept
They forward the records to the ibd place of your choice
They give you their recommendations that your local GI follows
No switching GI
It takes months to get in
So schedule a second opinion for records review now
You can always cancel later
Btdt
Ds has had two second opinions

You need to be off steriods for up to 6 months prior to restart of growth
Also you need to gain before you can grow again
Months of weight gain
And normal weight achieved

Is it at a pediatric large hospital ?
If not pediatric hospital even if you have to travel
Some travel 3-4 hours
But once you get established on good meds it's once every 3-4 months
So very douable as a day trip

Yes, the biggest pediatric hospital in the state. We are close. Maybe 20 minutes. I will definitely look into the records review. That is great information to have.

So sorry that your son has been without a diagnosis for so long. I agree about trying to get an MRE or pillcam ordered so that you can find out if there is anything going on in the small intestine.

For years, my daughter didn't have many other symptoms except stalled growth. We (parents and doctors) didn't even notice it because she was still growing, just too slowly. From age 8-12, she slipped from 97th percentile to 50th percentile in height, and from 75th percentile to 10th percentile in weight. It was only in the last year of that slip that she started having other symptoms--diarrhea, cramps, nausea, fatigue and mouth sores. At that point she was quickly diagnosed, but she was extremely sick and malnourished by then, so I think you're fortunate to have doctors who are looking for answers now, even though your son doesn't have many other symptoms.

Once her treatments started working (and with the help of tube feeding for several months, since her intestines were in rough shape), she gained 20 pounds in just a few months. She gained another 10 in the next few months, and then she finally started slowly gaining in height. It's now 3 years since her diagnosis, and she's gone from 5'1" and 70 pounds to 5'7" and 125 pounds. She's back at the 92nd percentile for height, so she's almost completely caught up.

I hope you get a diagnosis soon. It's so hard not knowing, and at least once you know, you can start treatment. Good luck.

So sorry you are having to go through all this and not saying that it is IBD at all but your description could mirror my son although we already had Crohn's diagnosis at the time we just thought it was under control.
I would definitely recommend the MRE or pill cam as that is what showed inflammation throughout small intestine in my son when scopes were clean and labs were in the normal range (we've discovered that he is always within normal range even with inflammation).
My son's story (take from it what you will) dx'd at 10 by 14 1/2 he had only grown a few inches at most and weight gain was virtually non existent. We did supplemental EN and he would gain weight and lose it as soon as we stopped. Only symptoms at this point were lack of growth weight gain and every year he would fall further down the growth scales. We finally saw the endocrinologist had all the testing done at the same time we had the MRE which showed inflammation and his medication was switched to remicade.
For him that was finally enough to bring his Crohn's completely under control we saw the endocrinologist a couple of more times over the next year with the last time his growth velocity was not on the chart and not because it had dropped off put because it went off the top of the chart. It took a little while for growth to kick in after initial weight gain. He was 5'1" and 89 pounds at the first visit to endo and the start of remicade. He is now nearly 4 years later a touch over 6'1" and 150 pounds (yes he's still super skinny but his non ibd brother is also really skinny). He went from being the shortest of his friends to the tallest pretty much over a years time. At 14 1/2 puberty was virtually non-existent and was in very early stages compared to his brother who is a couple of years younger and was way farther into puberty. That his hard and fast over the following year and he went through about 3 years of puberty in 1 year.
He feels fantastic and is enjoying his freshman year away at college. Here is an album of the difference over the last few years. http://www.crohnsforum.com/album.php?albumid=880&pictureid=3780
Good luck and keep us posted.

It is great to hear all these stories but scary at the same time. We go back to GI in a few weeks and I am getting more and more nervous.
I went through my sons growth charts again and he has gained about 10lbs since October 2016 and most of it was when he was entocort. However, he hasn’t even grown 3cm.
I was talking with some nurses at work yesterday and I just said I feel like we are going back and forth with no communication between doctors with what’s going on. Endocrine sends us back to GI and GI is waiting to see what Endo says. I will see what GI says in a few weeks and if they just want us to see endo again then I am going to get a call into our ped and ask for a better option.
We do have some other weird things going on with him like mouth sores. He did have hand, foot, and mouth at the beginning of October but he had a horrible mouth sore at the end of October that was definitely more than just a canker sore.
Thanks everyone for the advice. I will definitely push for everything mentioned.

Not to add more flame to the fire but mouth sores can be a crohn's symptom so just make sure you mention it to GI

Yeah, the GI has asked every time we’ve gone so I will make sure to mention it. I think I actually called over the summer when he had some. This time I have a picture.

Just another mom of another kid who only had stalled growth and weight gain for two years. Her first flare was major and by that time her colon was chop meat. You are VERY lucky to be on top of this. Give yourself a pat on the back! :dusty:

For O she had to put on a good deal of weight before the growth started. The intestines have to really heal first, then they absorb nutrients, then you gain weight and last step is growth. For O it took about a year. For T it took about a year but mostly because we didn't have good control over her disease for that long. She had precoscious puberty and we were told that her growth window was closed. She was 5 feet tall. Two years later she is 5' 4.5(can't forget that .5) inches tall.

Crohn's is chronic but it is manageable. There are good times and bad times but the good typically outweigh the bad. Once on treatment O went on to be a high honors student, three season varsity team captain, president of clubs, active in youth mission work etc. She is off in college now living her very typical American teen life. T just started high school and is following in her sisters footsteps nicely. The only thing Crohn's has kept them from doing is travelling to developing nations for mission work. We look at it like this, everyone misses something important at some point for something. Some kids get mono, some get the flu or tear their acl...our kids miss things from time to time due to Crohns.

You are in the frustrating and unknown part of the journey. Soldier on mama you are doing a great job and we are all here for you.

So my son has another mouth sore today. He had a huge one right after Halloween that lasted about a week. He woke up with another one today. Right now he is off the entocort and has been for 3 weeks. His appointment with gastro is in about 2 weeks so I called them today to see if they had any advice. The doctor said to start entocort again. Ugh... I am waiting until the appointment and if they only seem to want to put him on entocort here and there, I am done. It does seem to help with the few symptoms he has (except for growth) when he is on it but we can’t do that anymore.
The other issue is that I don’t want him to be on it if we are going to do more scopes. I don’t think the scopes would give us answers if we did them while he is on it since it seems to help so much, if that makes sense. Also, if they are going to want to repeat labs again, they probably won’t show anything wrong if he is on it when they do the labs. Is it crazy to think that?
I will be calling our ped after the gastro appointment if it goes the same way it did last time and if it goes the same way the endo went a few weeks ago.

I think we all get it who have struggled with doctors not finding anything when your gut tells you something is wrong.
And yes there is something to be said about them being "at their worst" for testing for example it is why they run labs on my son right before his infusion instead of right after so they can get a true picture if Remicade is lasting through the entire cycle or do they need to adjust dosage/timing.

I actually called today and labs were ordered. I can see them but I haven’t gotten a letter telling me what they all mean. It looks like he has high neutrophils and low lymphocytes. His crp and sed rate were both normal. The only other thing that came back abnormal was a slightly low sodium. I guess I am most concerned about the high neutrophil percent and low lymphocyte percent.

So I got the last of his labs back today. His Calprotectin was 77 which is in the borderline category. The doctor who published it to his portal said nothing concerning to note and to continue as planned. We have a GI appointment on Monday with his normal GI doc so I wonder if he will say anything. Also, we do weekly weight checks at home and he has lost over a pound and a half since last week. I mean, that can be clothing but he hasn’t been below 70lbs since June.

What lab did the fecal cal testing? Most labs these days are using 160's as a cut off and honestly a 77 is really not that bad and wouldn't get much of a brow raise from most docs. Even our GI who is VERY aggressive waits until over 100 in kids with small bowel disease before he adjusts therapy. Colonic disease much higher.

The issue is, is it climbing or coming down? What was his last FCP?

The normal sed rate and CRP along with a normal FCP are encouraging.

I am really more concerned with the fact that he responded to Entocort yet was taken off with no maintenance meds and now symptoms are starting to creep back. I am not really understanding their theory here. I hope you get more answers at your appointment.

His first FCP was 21. It was lab Corp. I guess we will say what they say on Monday. He is back on entocort again and has been for about a week and a half.

Was that 21 FCP after Entocort was started or his initial one when all the investigation started?

I think docs like to see three points before they consider it to be a trend and both are solidly in normal and FCP can swing a lot from one test to another BUT with mouth sores, a stalling in weight gain and an increasing FCP, I am glad they started him back on Entocort.

Good Luck on Monday. I hope the GI has some clear cut answers and a clear path going forward.

It was the initial FCP before anything was started and before he had scopes.

Wow! That is a low fcp and would definitely not get a kid scoped at any of the three GI's we have been to. Heck my younger daughter had an fcp of 1150 and the GI told us to wait two weeks with no NSAID use and see. Next one was 750 and GI said we could scope or wait two months and test again. And this was with a sister who was already dx'd!

I know you are having a frustrating time getting to a solid dx and plan but pat yourself on the back for getting as far as you have gotten. Something is going on here otherwise why would have responded to Entocort so well and then slid once he came off it? Keep at it mama:tank:

Fcp can be low and still have Crohns
Ds has had very low fcp less than 15
The highest was at 238 while actively having bloody diarrhea
So for him not the best dx tool

Really hope you get solid answers soon

My kiddo's FC has been on the low side for a Crohn's kid. We also use LabCorp and her GI knows that for her, under 50 is good. Once we get to over 100, then she starts changing the treatment plan or at least watching much more closely.

Her highest has been 480 or so. Her lowest has been around 25 or something. She has Crohn's in both her small bowel and in her colon but it has always been worst in her terminal ileum.

Mlp is right. It just isn't the norm which is why it important to look at the whole picture and why we parents have to advocate so hard for our kids.

I have been saying this a lot on her but only because it was new info to me. Our new GI says Fcp over 100 for kids with small bowel disease means change something about therapy. This is vastly different than what has been used for years and illustrTes why it is so important to know where the disease is.

Repeated courses of entocort without any screening fallow ups with endoscopy is not interesting treatment plan and monitoring in my opinion, I agree with you Sallie94. But it is interesting to scope at the end of a treatment to see if inflammation has resolved or not inside the ileum though.

You could ask for enteral liquid diets and see if these could help. Not only they can put inflammation in remission but they can help to get good amounts of calories. Some GI doctors prescribe them to induce remission instead of steroids, mostly in kids, here in North America.

Also I am thinking, if your son has important stomach issues, eosophagitis, Reflux and bad allergies, it could be possible that his appetite is low and that he doesnt feel like eating much and thus losing weight, this is an hypothesis. On entocort which is a steroid, the appetite and weight increase in many people. This is a well-known side effect of steroids. We feel like eating a lot and we feel very energetic...

We are doing the MRE next week. Hopefully that will provide answers. The doctor is hesitant to give him a diagnosis of crohns unless he is 100% sure. He doesn’t want to miss it either. He is curious about his calprotectin so we are repeating it in 4 months and again in 8 months to see if it’s a trend. He also said if he relapses off of the entocort again, then we may need to discuss other options but it really will also depend on what the MRE says as well. He said if the MRE shows anything we will definitely discuss other options for medication. He did lose two pounds since we were there in July. He also is really wondering about the mouth sores.

So still no answers but I feel like we have a better plan and we are on the road to more answers especially with the MRE.

Sallie94 said:

We are doing the MRE next week. Hopefully that will provide answers. The doctor is hesitant to give him a diagnosis of crohns unless he is 100% sure. He doesn’t want to miss it either. He is curious about his calprotectin so we are repeating it in 4 months and again in 8 months to see if it’s a trend. He also said if he relapses off of the entocort again, then we may need to discuss other options but it really will also depend on what the MRE says as well. He said if the MRE shows anything we will definitely discuss other options for medication. He did lose two pounds since we were there in July. He also is really wondering about the mouth sores.

So still no answers but I feel like we have a better plan and we are on the road to more answers especially with the MRE.

Click to expand...

Hope you get answers soon.

Can you get a second opinion ?
We had a GI hesitant to label Crohns
Despite pathology report stating granulomas found etc
Indicative of Crohns
Second opinion asked “why are you here clearly your child has Crohns”
After that our GI declared Ds had Crohns
Helps second pathologist also dx Crohns

Sometimes a second set of eyes help
Ds MRE also showedthickenimg ofthe Terminal ileum


Definitely get a second opinion
Even if you schedule it now it will take 2-3 months to get in if your lucky
Some places 4-6 months
At Boston children’s
Children’s of Philadelphia
Cincinnati children’s

Good luck

I know I posted a while back and never really updated. My son ended up having an MRE back in December and everything was normal. We continued on the entocort and then stopped after about 8weeks. Well not long after he started having some mild abdominal pain here and there. Not bad at all. He had it about once a week probably. We just let the gastro know about it and in February we schedule another scope. We just got those scopes done this week. The doc gave me a call tonight and told me that they saw the same mild microscopic ileitis. The doc isn’t sure what to think. They also found eosinophils in his esophagus this time. He gave us a bunch of options and just told me what his next steps may be. We are going to follow up in a month to discuss this all further and do some labs. We discussed things like remicade, Imuran, and other medications in those categories. He said it makes him a bit nervous to start treating this aggressively because my son feels well and looks well for the most part. He also has not entirely classified this as crohns. I have requested the records just so I can read them through to have a better understanding.
Another thing we are going to do it stop using the omeprazole and start using a budesonide slurry to coat his throat.
I just don’t know what to think. I don’t know what to do either. I do not want to start a medication unless we are sure. His calprotectin was mildly elevated at 77 back in November but it was repeated in February and was less than 16.
This is all so hard and nobody gets it because he seems fine just small.

Sallie94 said:

I know I posted a while back and never really updated. My son ended up having an MRE back in December and everything was normal. We continued on the entocort and then stopped after about 8weeks. Well not long after he started having some mild abdominal pain here and there. Not bad at all. He had it about once a week probably. We just let the gastro know about it and in February we schedule another scope. We just got those scopes done this week. The doc gave me a call tonight and told me that they saw the same mild microscopic ileitis. The doc isn’t sure what to think. They also found eosinophils in his esophagus this time. He gave us a bunch of options and just told me what his next steps may be. We are going to follow up in a month to discuss this all further and do some labs. We discussed things like remicade, Imuran, and other medications in those categories. He said it makes him a bit nervous to start treating this aggressively because my son feels well and looks well for the most part. He also has not entirely classified this as crohns. I have requested the records just so I can read them through to have a better understanding.
Another thing we are going to do it stop using the omeprazole and start using a budesonide slurry to coat his throat.
I just don’t know what to think. I don’t know what to do either. I do not want to start a medication unless we are sure. His calprotectin was mildly elevated at 77 back in November but it was repeated in February and was less than 16.
This is all so hard and nobody gets it because he seems fine just small.

Click to expand...

I thought ileitis was a form of Crohn's disease but I could be wrong.

Yeah, I guess I don’t really know. I also don’t know how they can say it is microscopic when the gastro doc could see it during the scope??? Who knows...

I think they also did put in the diagnosis of eosinophilic esophagitis but I’m not sure if that is the actual diagnosis they are giving him or if they just have that in the chart because it might be that.

I'll tag my little penguin - her son has had microscopic Crohn's for years. Do you know what his biopsies showed? Did they show granulomas?

I’m not sure. I was on the phone for over 10 minutes and there was a lot discussed. I should get the records within th next few days so I should know then.

Things on EoE
Apfed
You can go eliminate the offending food route (preferred for kids )
Or steriod slurry route (less preferred due to steriods )
Top six elimination diet (no wheat. Milk eggs soy peanut/treenuts and fish/shellfish)
Some add beef as well

CChmc is the top in the country for EoE
Parents of kids with food allergies has a section on egids
http://apfed.org/about-ead/egids/eoe/

Some believe egids are pre cursors for Crohns

https://community.kidswithfoodallergies.org/forum/gastrointestinal-disorders


As far as illeitus yes that is primarily woth crohns
You may have caught it early like we did
Ds was only 7 at dx
Due to extra intestinal manifestions he was place on remicade within a year
This made all of his scopes pristine
No damage no microscopic inflammation
So much so docs wondered if he REALLY had Crohns
Switched to a slower acting biologic in August
Stelara takes 6 months to work
We scopes at six months and found his terminal ileum was healing
But he has signs of microscopic illetius on biopsy
Thus proved Ds had Crohns all along
That the anti tnf biologics worked extremely on his gut

In Ds case he can’t go off biologics due to juvenile spondyloarthritis (eim of Crohns )
Which requires them

They work and most have surgery within 5 years of dx
So I consider Ds very lucky

Definitely get a second opinion
Even if it’s record review
If we hadn’t Ds would have been on Pentasa longer
Most GI like a second set of eyes when it’s not typical
We went to Cincinnati (cchmc )
For the second set of eyes
Actually started looking at EoE
But later after our scope with Ds GI
Found granulomas on biopsy etc...
We saw just a regular GI there who reviewed everything
And declared Crohns

Another thing eosinophils can be raised with Crohns
This is not EoE but secondary eosinophilia

That said above a certain number some still consider it EoE
Hence the need for a second opinion

When was he put on Entocort and how much and for how long?

Entocort is a steroid used to treat Crohn's. If he was on it right before his cal pro test that could be why it was so low at 16.

Was he on Entocort before his MRE also? That would explain the normal findings there also.

At the very least, I would be repeating cal pro in March or April. I would also be looking for a second opinion. Not saying he definitely has Crohn's but something is going on and you need a doctor who is going to be passionate about finding out what it is.

He was on entocort during the MRE but I stopped it for 1-2weeks before it. He was not on the entocort for the calprotectin test. He stopped it probably in January but I’m not 100% sure.

I think that I am a little hestitant for the doctor to call this crohns too. I think he just doesn’t want to misdiagnose him with something he doesn’t have. He is very thorough and is not against going for a more aggressive treatment. We will be discussing it further at the appointment we have in April. I am terrified of starting him on one of the medications he talked to me about last night. He has had all completely normal labs except for one calprotectin lab. They only things we have are a growth delay, slow weight gain, and the biopsy results. Also some reflux and EOE.

I will discuss this with his primary when we go see her in a week and a half. I just don’t know what to do and I need her input before I make a decision.

I would get a second opinion. Remind me, has he had a pillcam? It's possible he has Crohn's in his small bowel that the MRE missed.

It's also possible that the Entocort led to a normal MRE. Stopping it 10 days before wouldn't really give you an accurate result.

On the one hand, you don't want him on meds he does need but on the other, since you have symptoms like growth delay, if does have Crohn's, you need to act fast. You want him to catch up on growth ASAP and there is a relatively small window for that.

That is why I'd suggest a second opinion. Where are you located? The biggest ped. IBD centers are at Boston Children's, CHOP (Philly) or Cincinnati Children's.

I would also get a repeat fecal calprotectin test about a week before the next GI appointment. This way if he is sliding back you will have more concrete information with which to make decisions.

Good luck!

We do plan on repeating the calprotectin level at some point again. I’m sure the next appt they are going to do a lot of labs. One of them being the IBD panel if that makes sense.

We are not close to any of those hospitals at all.

And he has not had the pill cam but that was something the GI mentioned that we may do. We just have to wait until his next appointment to figure it all out.

You can have a records review done without traveling, if you want.

Yep cchmc (Cincinnati) has eosinophilia center of excellence
They will do a record review easily for you
Since they won’t see any kids who they don’t feel has EoE
They will also verify if it’s crogns

Here is what the pathology report says:

C: ESOPHAGUS, DISTAL, BIOPSY:
1. Mild patchy esophageal eosinophilia, featuring a peak eosinophil count of 10 per high power field (see comment)
2. Negative for columnar mucosa
) The di erential diagnosis primarily includes eosinophilic esophagitis (EoE), gastroesophageal reflux disease (GERD), and proton-pump inhibitor-responsive esophageal eosinophilia (PPI-REE).

ILEUM, TERMINAL, BIOPSY:
1. Mild nonspecific acute ileitis (see comment)
2. No histologic evidence of chronic ileitis, granulomas or dysplasia

The presence of acute ileitis is a nonspecific finding; the primary differential diagnosis c considera ons include medica on induced inflamma on (typically NSAID related) and Crohn's disease; however there is no evidence of chronicity or speci c features of Crohn's disease.


So it copied super weird on my iPad.

Ileitis simply means inflammation in the ileum. The problem is why. There are many reasons. I have actually had ileitis and a couple of ulcers that were chalked up to the prep for the scope. So it could have been prep or NSAID's or, or, or....

The path report says acute inflammation and not chronic which would not point directly to Crohn's but who knows.

The thing is he is having other issues so someone will have to figure out what is causing all of this.

So sorry you are stuck in this in between world but you are learning that things move slowly in GI world.

In the meantime have you read this?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/

I’m wondering what qualifies as chronic. He had a scope done a year ago with the same inflammation in the same spot but it was done at a different place. So would that mean it is chronic?

If that inflammation had been there all along, you would have seen signs of it in the biopsies. Acute ileitis generally is not enough for a Crohn's diagnosis, especially if there are no ulcers and no other features suggesting chronic inflammation.

But it does make me wonder why he has had ileitis twice...does he take NSAIDs?

Two scopes, a year apart, same spot...sounds like it could be chronic but if it is related to prep then it wouldn't be.

Ugh! Keep on them to find an answer...you are doing a great job advocating for your child!

He takes ibuprofen if he’s sick for a fever. He doesn’t take it frequently though.

This article talks about biopsies and what is considered chronic vs. acute and what might be prep related:
http://www.spg.pt/wp-content/uploads/2015/11/2013-ibd_biopsies_13.pdf

For example, my daughter's biopsies showed chronic and acute inflammation - crypt distortion, granulomas etc.

It could be early Crohn's but I think it's hard to know...

Last time we had the scope the doctor said it could have been prep related. He didn’t say that this time. He just said that it’s still there. I wonderin though, since he was treated with entocort 3 times of that may be why they said it was acute. He has been off the entocort for a few months now.

That's definitely a possibility - if he was on steroids that could change scope results. He may be taking that into account and that is why he is thinking it's IBD.

i haven’t updated in forever but we are still dealing with issues. My son still has not gained weight and he has actually lost weight since this time last year. He was 72lbs last year and he is now 68. Well we saw the gastro in April and our plan was to watch his calprotectin level and if he was to develop any symptoms we would start a more aggressive treatment. His GI is “mildly suspicious” that we are dealing with crohns. At his appointment they did very extensive labs and everything was normal.
Well fast forward to mid July and my son has been off of ADD meds for over a month and he still has not gained any weight. We have determined in the past that his lack of weight gain is not from his ADD meds. I called his primary and we have a well child scheduled in mid August that we will talk about things and she said she wanted to give it until then to see if he would gain weight but she also wanted me to check in with GI. I called them and told them he has not gained weight in a very long time at this point he is possibly considered underweight (?). He also hasn’t grown much either. Well they decided they want him to start the entocort again and they want to track his weight to see if he gains again. Well we are two weeks in and he has gained two and a half pounds. I just called to update the GI but I don’t know if I will hear anything back from them. He won’t go for an appointment until the end of October, unfortunately but now I’m curious to see what they are going to say.
Why is he gaining weight when he is on the entocort? And why is he slowly losing weight when off? I just don’t know what to think. His eating has not changed since starting it but he is still gaining. He maybe snacks a bit more when on the med but I wouldn’t think that would make that big of a difference. Also, his hemoglobin was on the lower end when we had labs at his primary at the end of June. His hemoglobin was up to 12.9 but it is now down to 11.6. I don’t know if that is a big deal but it seems to improve when he is on the entocort.
The other issue we are dealing with is the last calprotectin test was not covered by our insurance. It was normal but we were going to follow it every 3-4months. Previously it was <16 and this last time it was 23. So nothing concerning there.
So my question, is the entocort causing him to gain weight because it’s a steroid or is it really helping something? I don’t know how much longer I can go on like this. There is clearly something going on that is causing issues with his weight and growth but we just can’t seem to figure out what it is.

Well, it's a steroid, and most steroids can cause water retention. So that could be the quick change in weight that you see.

However, if he continues to steadily gain weight while on Entocort, my guess would be there was inflammation preventing weight gain and Entocort is taking care of it.

The other thing with steroids is that they can increase your appetite, which leads to weight gain. Having no appetite could be related to IBD or something else entirely. It's hard to say...

I will say that my daughter has NOT noticed an increase in appetite with Entocort - not the way she gets hungry and cranky with Prednisone. Entocort is milder in terms of side effects since it is released in a specific part of the gut (terminal ileum and part of the colon).

His appetite hasn’t increased much at all. He’s pretty much eating the same as he has in the past with maybe 1 or 2 more snacks. Yesterday he didn’t eat lunch because he had those extra snacks so in the end I don’t even know if he is getting anymore calories. I haven’t noticed any other side effects.

Hi Sallie94 - not a Crohn's expert - my older son was just dx in April - but tons of experience with another son with growth issues. We had to overfeed him to get his body to start growing (2600-2800 calories depending upon how active he was). If the body is malnourished it feeds the vital organs only (no growth) until there is a message that the body is no longer starving. We fed him every two hours during his waking hours - high caloric/dense food (This allowed for smaller quantities) for a long time - probably a year. He still eats every couple of hours to this day - much more frequently than my other kids.

FWIW inflammation requires a lot of calories
So Crohns kids require massive amounts of calories to grow
Whole Foods require energy for the body to break it down

Polymeric formula (otc pediasure etc..) are easier than solid food less energy
Semi elemental peptamen jr peptide are broken down chains
Less energy easier to absorb than polymeric

Elemental (amino acid based ) neocate jr and elecare jr
Are no intact protein
Everything is broken down into an imo acid (body normally does this )
But since it’s already an amino acid only takes a few inches of healthy intestine to absorb and very little energy
Easiest on the gut

To put it into perspective
Ds is 14 and drinks 48 oz of neocate jr a day
Plus lunch /dinner /snacks ofsolid food
Close to 3000 calories a day
At 12 he was 100 -110 lbs and now is close to 140 but grown over 5 inches in a year and expected to grow another5

Formula which he started at dx at age 7 (after being 50 lbs for two years pre dx) formula plus the right meds (biologics Stelara and mtx ) has helped him gain and grow on his normal growth curve

^Yes - it is very common for Crohn's kiddos to need more calories. My daughter was done growing when she was diagnosed, but was underweight and became severely underweight within a year or so. To gain weight, she needed 2400-2500 calories, which really surprised her dietician, considering she was very petite (5'2) and no longer growing at 17. She gained about 25 lbs due to formula (she was tube fed) and is now a healthy weight and doing well!