09-17-2018, 02:52 PM   #1
Jelly loves Peanut butter
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Ruptured appendix

My son is in the hospital after having surgery Saturday for a ruptured appendix. He didn’t feel good Thursday after school had lower belly pain and fever . About 4 weeks prior to this had similar thing except had very bad headache, cough, congestion too. Pediatrician diagnosed him with sinus and ear infections, took 10 days of antibiotics. He felt better but still had congestion and cough, developed fever about 4 days after stopping antibiotics (no belly pain then). Back to pediatrician, said probably now has acquired a virus. Still very tired out and intermittent fevers 1 week which brings it up to Thursday .

Next morning had a scheduled appt with rheumatologist. Told him course of events. Told us to watch if fevers get worse. Not even gone a couple hours and belly pain localized to right lower area. It wasn’t too bad but a little worsening in the afternoon so took him to emergency room. Ultrasound showed appendix but surgeon wanted mri to make sure crohns wasn’t flaring which turned out ok so had surgery Saturday morning. Surgeon said appendix looked so bad it must have been like that a while.

So now surgeons, GI, and infectious disease docs trying to figure out when it is ok to restart methotrexate and remicade. They said no remicade for 6 weeks post op and no MTX for 2 weeks.

On another note, my son had his usual GI visit end of August, happened to be with a different GI accidentally their office rescheduled him with someone else. She thought we were there for a second opinion??? And proceeded to say she couldn’t say with certainty my son had crohns???!!! Based on colonoscopy and egd biopsies. I have appt with his reg GI in November so I was planning to discuss this with her. Now here in hospital a 3rd GI sees my son and says”sounds like there’s been some confusion about what type ibd he has.” What??!! She thinks he has ulcerative colitis based on same colonoscopy and egd findings!! I’m so confused that 3 different GI s can have that much of a difference in opinion! Now what! Ugh!
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Mom of Lincoln (age 12)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
09-17-2018, 03:02 PM   #2
Maya142
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First, really sorry to hear your poor kiddo has to deal with this! I'm kind of surprised they are waiting so long for the Remicade, but I guess it's because his appendix was ruptured?

I know a kiddo who had appendicitis and took their Humira shot at their regular time (6 days post-op) but I would assume that kid did not have a ruptured appendix (my daughter's friend - haven't spoken to the mom so not sure if it was ruptured).

Is he also on antibiotics?

The questioned Crohn's diagnosis - what is that based on? Do you know what his first scopes showed? Or why the second doctor thinks he does not have IBD?

So to recap, your regular GI diagnosed Crohn's, a second GI at the same practice thinks he does not have IBD at all and a third GI in the same practice thinks he has UC?

Usually the issue with getting a second opinion within the same practice is that you aren't really seen with fresh eyes and the second opinion doctor agrees with the original doctor - sounds like you have the opposite problem!

But either way, I think you probably need to see a pediatric GI elsewhere for a proper second opinion.

How is your son feeling now? Sending hugs!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-17-2018, 03:44 PM   #3
Jelly loves Peanut butter
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He is on iv antibiotics now and when discharged they said by mouth, not sure for how long. He is actually doing very well overall and has had no post op fevers. His crp pre op was 5.0. He will have crp tomorrow and based on that dr said possibly able to go home.

As far as the questionable crohns dx, I told rheumatologist about the prior GI appt. (also 2nd GI opinion said go off meds and wait for flare then rescope to confirm!?). He said he would not stop meds as they are really helping his arthritis. He said after 2-3 years& treatment he would consider stopping meds if my son is symptom free and doing
well. But also said there really is no research to support that and it would really be a guessing game but will see what the future holds.

I think my plan for now is just keep meds the same, have GI appt in November and see if i can get any answers. Prob pursue another opinion but not in a hurry for that since I will not be stopping his meds. Thanks maya for your input, as usual❤️💙💜
09-17-2018, 05:54 PM   #4
my little penguin
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Big hugs
Btdt with the is it “REALLY Crohns”
But like you Ds needed to be on biologics for JIA so wasn’t worth stopping to find out

Faster forward 7 years
Yep 7 of back and forth all the time woth many GI every time he was inpatient for anything
Ds had an enlarged lymph node removed from his neck
Had to stop humira while they figured “why “
Took months
Arthritis and gut got worse
Retried humira -Failure big time
So Stelara was started
Rescoped 6 months after starting Stelara

And wouldn’t you know
They found definitive evidence of CROHNS healing
Just glad we didn’t listen the first time
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09-17-2018, 06:30 PM   #5
crohnsinct
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Oh my gosh! That poor boy. I could totally understand how an IBD dx confused matter but gosh for it to get so bad. I am glad to hear he is doing so well but what a scare. As if the surgery wasn't enough? Now you have all the Crohn's confusion on top of it?!

I would run the second GI's theory by the first and see what they say. Ask him/her why they said Crohn's. Were there Granulomas? If so, pretty definitive Crohn's. As for the third GI and the UC designation, well that doesn't really much matter until you are coming down to a surgery decision. They treat both pretty much the same. Maybe there are some variations of drugs but many, many UC patients end up on Remicade so at this particular point it is academic which IBD he has. So you have two saying IBD and one saying not. I would be good with the two saying IBD and move forward from there but don't disagree that a third opinion might be helpful....when things settle.

There is a lot in the literature these days about not needed to hold Remicade for various surgeries but I am sure you are in good hands and better safe than sorry.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

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
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
09-17-2018, 07:02 PM   #6
Maya142
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For what it is worth, my daughter has had many surgeries, including abdominal surgery (open abdominal surgery, not laparoscopic) without having to stop biologics.

He said after 2-3 years& treatment he would consider stopping meds if my son is symptom free and doing
well. But also said there really is no research to support that and it would really be a guessing game but will see what the future holds.
There is some research on stopping biologics for kids with JIA. The current recommendations are that kids should be in medicated remission for 2 years before they are stopped (if you want to stop them at all, that is). And most kids do end up flaring eventually and going back on meds.

The remission rate for juvenile spondyloarthritis is actually pretty low . Being HLA B27+ and having hip or ankle disease (the joints, not enthesitis) suggests a worse prognosis.

About 60-70% of kids with juvenile spondyloarthritis have gut inflammation. The same is true for adults with Ankylosing Spondylitis - something like 70% of adults with AS have subclinical gut inflammation. It does not usually cause gut symptoms. About 7-8% of adults with AS have overt IBD.

When my younger daughter was diagnosed with Crohn's, we talked to two pretty big researchers - one who focuses on AS and runs many AS trials, some of which my girls and husband are in, and one whom focuses on Crohn's Disease, particularly pediatric Crohn's Disease (she sees both adults and kids). She said she was uncertain whether M had Crohn's since her Crohn's was fairly mild - she had ulcers in her colon and a red, friable TI that bled when biopsied but the inflammation wasn't terrible and neither were the ulcers.

Biopsies showed acute and chronic inflammation, including granulomas. Our GI was sure it was Crohn's. The ped. GI researcher, on the other hand, was not so sure. She thought it may be AS related gut inflammation that would go away when her AS was better controlled.

I should add that M's AS was not at all well-controlled on an anti-TNF but her Crohn's responded very well to an anti-TNF, essentially going into remission.

The AS researcher said there were minute differences between AS related gut inflammation and Crohn's inflammation seen on biopsies but not enough was known and that currently, we didn't really know enough to distinguish and therefore M should be treated for Crohn's.

However, her Crohn's was mild and her AS pretty severe and uncontrolled, so a year or two after discussing all this, we took a chance and put her on a biologic that treated the AS but did not treat Crohn's. Her AS got MUCH better but her Crohn's promptly flared (even though she was on Imuran too, at the time). The scope showed inflammation in her TI and colon, along with several ulcers in her TI.

Her AS, on the other hand, was doing better than it ever had been on anti-TNFs .

But anyway, the second scope was enough to convince everybody that M truly had both Crohn's and AS and since clearly the two conditions flared independently of one another.

I certainly agree that going off meds is not the best idea - he had sacroiliitis found on MRI, right? Sacroiliitis can be very difficult to control and if he is doing well on meds, I'd most definitely keep him on them!

I would go back and look at his initial scope report/biopsy report and see what it said. And of course, discuss it with his regular GI.
09-18-2018, 11:26 AM   #7
Jelly loves Peanut butter
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Thank you mlp, crohnsinct, and maya. Still here today in hospital. Abdomen is still too tender per surgeon for discharge. Crp was 5.0 on admit but now 3.2. CIC.. I’m in Cali too, what area are you in?
09-18-2018, 11:29 AM   #8
Jelly loves Peanut butter
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Mlp... when the neck lymph nodes were removed did they find anything? My son has some Enlarged neck nodes too for over a month but could be from recent ear/sinus infection.
09-18-2018, 11:35 AM   #9
Maya142
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Poor kiddo - I hope he gets to go home soon!!

Do they think the tender abdomen is from the surgery/appendicitis or is it possible that his Crohn's is flaring?
09-18-2018, 11:55 AM   #10
my little penguin
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His was growing
They found multiple granulomas
No sign of infection
And declared it was “AUTOIMMUNE “
So he has some unknown. Autoimmune disease


Lymph nodes from a cold should reduce with a week or two tops

Ds had multiple ultrasounds to prove it was growing
09-18-2018, 04:41 PM   #11
pdx
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Really hope that he's feeling better and gets to head home soon.
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
09-18-2018, 05:55 PM   #12
Jelly loves Peanut butter
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Poor kiddo - I hope he gets to go home soon!!

Do they think the tender abdomen is from the surgery/appendicitis or is it possible that his Crohn's is flaring?


No they don’t think he is flaring. He had an mri abd and only the appendix looked inflammed. Infectious disease doc wants crp under 1.5 before discharge and less tenderness so we will see tomorrow.
09-23-2018, 10:59 AM   #13
pdx
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How's your son doing? Any more consensus from the doctors about his IBD?
09-23-2018, 12:31 PM   #14
Jelly loves Peanut butter
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My son is doing very well. He has been a little emotional here and there since being home. (Came home Wednesday night). His worst fear was surgery and he is wondering why all this has happened to him.

As far as the GI issues, nobody from their dept came to see him in hospital after the initial doctor. Kind of upset they weren’t checking in on him but we didn’t really need their input other than the remicade and MTX rescheduling. We have an appt in November with his usual GI so I want to get some of my questions answered from her and go from there. He had his scopes in 2016 but also had c dif with 2 months of diarrhea right before so of course he would have inflammation visually. She showed my the pictures and he had stomach, duodenum, and a few areas in the colon. I remember asking if there were granulomas and she told we yes. Just feeling frustrated, angry, confused. 😖😖😖
09-23-2018, 01:51 PM   #15
Maya142
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Have you considered seeing a psychologist for your son? Your GI dept. or rheumatology dept. will likely know whom to refer you to. It helps to see a psychologist who works with kids with chronic illnesses.

He should also remember that even though surgery was his worst fear, he got through it!!! He is a tough kid!

If biopsies showed granulomas, then it's pretty certain he has Crohn's. Also, if there was inflammation in his duodenum and stomach, then it is definitely not UC!!!

I think your plan makes a lot of sense - talk to his usual GI and then see if another opinion is necessary. If you do need another opinion, I would try to see someone at a completely different children's hospital, so you really get a fresh set of eyes looking at his situation.

But remember that he will need Remicade/MTX anyway for his spondyloarthritis. If he had sacroiliitis at 9 yo, then he is likely going to need long-term treatment. Peripheral arthritis - arthritis in the knees, ankles, hands for example - can be treated using MTX or sometimes, Sulfasalazine. But axial arthritis (arthritis involving the spine and SI joints) is treated with biologics and does not respond to MTX.

So even if his Crohn's dx is up in the air for a little while, he will have access to treatment.
09-23-2018, 09:18 PM   #16
pdx
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Glad that he's home and doing well!
11-25-2018, 12:25 PM   #17
Jelly loves Peanut butter
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Just an update for my son... restarted remicade late October so he was off for 11 1/2 weeks. He had no GI symptoms but his arthritis symptoms returned with some minor ankle swelling and pain at about 9 week mark off the remicade. He had his usual GI appt last week. Also labs from October showed he has iron deficienct anemia so he is now taking supplemental iron. So his GI doctor said she also thinks he has ulcerative colitis and thought we knew this as well. She reviewed his scope again with me in the office. Inflammation was in the stomach, duodenum, cecum, and transverse colon. She said also there were no granulomas. Since UC only affects the colon, I asked why inflammation can be in stomach and duodenum. She diagnosed those areas with gastritis? As far as rescopes, she said only if he is flaring will she do rescopes. Also appendix biopsy showed acute inflammation but no chronic. Of note, I have an IBD binder that they gave me from the very beginning of this adventure and the first page has written on it Crohn’s diseases with a diagram of GI system and circled areas of inflammation??

So I still feel a little confused and even a little angry that for 2 years talking about crohns that now it is something else. But is one really better than the other...not really!
11-25-2018, 03:38 PM   #18
pdx
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Thanks for the update and glad to hear that your son was able to restart Remicade without issues. I agree that the back and forth on your son's diagnosis is confusing, but it sounds like it's not going to cause any change in treatment, so maybe it doesn't matter for now.
11-25-2018, 07:37 PM   #19
Maya142
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Honestly, the treatment is pretty similar. Remicade and MTX are used for both Crohn's and UC. The difference between Crohn's and UC become important only when surgery is going to be done to remove the colon.

Hopefully, you will never get to that point!

I am a bit confused by the gastritis - why does she think he had gastritis at dx? I mean why would have gastritis out of the blue vs. stomach inflammation and duodenal inflammation due to Crohn's?

FWIW my daughter's GI said the same thing about her stomach inflammation. BUT M was on an NSAID at the time, and since then has always been scoped while on an NSAID. She's had a lot more endoscopies vs. colonoscopies. Always has gastritis - no ulcers, just inflammation. She has severe arthritis and absolutely refuses to stop her NSAID. It's really clear when she needs it - she becomes much stiffer and can barely walk.

Since we can't stop the NSAID and so she's been on a high dose of a PPI + Carafate + Maalox and last scope still showed mild gastritis. Though at least it's mild.

She'll move to an adult GI soon and I'm interested to learn her perspective on the gastritis. To me it seems like the simplest explanation is most likely - all the inflammation is caused by Crohn's...
11-25-2018, 07:44 PM   #20
Maya142
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After re-reading what you wrote, I think I would get an opinion at a totally different children's hospital - maybe even one you have to travel for. A good doctor is worth the drive. I know for us it is - we have done it many times for pediatric rheumatologists.
11-25-2018, 07:46 PM   #21
my little penguin
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Can you get a second opinion ?
Send his records and biopsy slides to Boston children’s ,Cincinnati children’s , or children’s of Philly
We did that more than once
GI welcomes it

Also told gastritis for stomach and duodenum inflammation
for years
The funny is he has been on NSAIDs for arthritis for a year and the first time his “gastritis and duodenitis is gone
(Assume Stelara fixed that though )
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