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Crohn's Disease Forum » Parents of Kids with IBD » Possible Crohns diagnosis

11-07-2017, 09:08 PM   #1
Join Date: Nov 2017
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 hadnít 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 hadnít 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 ďcuriousĒ 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.
11-07-2017, 09:30 PM   #2
my little penguin
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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
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

DS - -Crohn's -Stelara -mtx-IVIG
11-07-2017, 09:43 PM   #3
Join Date: Nov 2017
The GI has only said that it could be the onset of IBD or even prep related, which I find hard to believe. He hasnít 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 Iím 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 heís 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.
11-07-2017, 10:03 PM   #4
my little penguin
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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
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
11-07-2017, 10:07 PM   #5
Join Date: Nov 2017
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.
11-07-2017, 11:03 PM   #6
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Location: Portland, Oregon

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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.
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
11-09-2017, 12:46 PM   #7
Jmrogers4's Avatar
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Location: Boise, Idaho

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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.
Good luck and keep us posted.

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
11-09-2017, 01:10 PM   #8
Join Date: Nov 2017
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 hasnít 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 whatís 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.
11-09-2017, 01:26 PM   #9
Jmrogers4's Avatar
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Location: Boise, Idaho

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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
11-09-2017, 01:30 PM   #10
Join Date: Nov 2017
Yeah, the GI has asked every time weíve 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.
11-09-2017, 02:22 PM   #11
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Join Date: Mar 2012
Location: California

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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!

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.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
11-14-2017, 07:24 PM   #12
Join Date: Nov 2017
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 canít do that anymore.
The other issue is that I donít want him to be on it if we are going to do more scopes. I donít 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 wonít 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.
11-15-2017, 09:43 AM   #13
Jmrogers4's Avatar
Join Date: Jun 2012
Location: Boise, Idaho

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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.
11-15-2017, 09:28 PM   #14
Join Date: Nov 2017
I actually called today and labs were ordered. I can see them but I havenít 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.

Last edited by Sallie94; 11-15-2017 at 09:48 PM.

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