Why accidents only from 5pm-9pm daily for our 8 year old with Crohns?

[cdnusr]

Hi,

Our 8 year old was diagnosed 1.5 years ago with Crohn's and had been on Remicade for the last 6 months. In the last 1 month he is having a lot of accidents from 5:00PM to 9:00PM each day. We have thrown away so many pairs of underwear and started to use diapers during that time frame.
Why would there be only accidents during that time frame?
What causes these accidents?
Would certain food cause this? His doctors said for him to eat any foods and she rejected us getting a Dietitian at his last appointment last week.
She said his accidents have "Nothing to do with Crohn's". How can that be true?

Looking forward to the helpful responses.

Thanks You.

 

[my little penguin]

Please join us in the parents forum
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http://www.crohnsforum.com/forumdisplay.php?f=49


More kiddie experience

How far out are his remicade infusions ?( every 4,5 ,6 or 8 weeks )
Dose is he on(5mg/kg or 7.5 mg/kg or 10 mg/kg)?
What do his stool tests fecal cal /bloodwork look like ?
Last imaging scopes done ?
Gained weight recently ?
Kept a food diary ?
What supplemental nutrition is he on ( kids boost /pediasure peptide peptamen Jr or neocate Jr)?

Tagging
Clash
Maya142
Jmrogers
Tesscom
Farmwife
Mehita
Pilgrim

 

[Jmrogers4]

I know my son when flaring, mornings are the worst for him. Even when he was first diagnosed he would generally only have stomach aches in the morning and was fine the rest of the day.
Even now that he is in remission he is in the bathroom like clockwork, same time every day he has a bm.
I tend to think that just because something is or is not "normal" for Crohn's doesn't mean it can't be Crohn's so many things with my son that "wasn't" Crohn's have miraculously cleared up now that he is in remission hard to say it's just coincidence.
I agree with MLP what testing has been done

 

[cdnusr]

Hi,

I just posted the question to here also as suggested: "Parents of Kids with IBD"

I will reply to the questions above shortly. Thank you very much.

 

[Farmwife]

My Grace is 7.5 now and she had similar issues.
Pop is a big culprit but her issues affected her bladder more than her bowels.
Now that she's doing better her issues have gone away.

 

[cdnusr]

He gets Remicade every 8 weeks.
No new scopes since 1.5 years when he spent 7 days in the hospital.
We never heard anything about his blood work results.
No weight gain in the last 3-4 months.
His stool is soft mainly. All his accidents are soft stool.
He never complains of stomach aches ever.
His doctor said no need for any food diary or supplements.

How do we prevent these daily 5-6 accidents in the evenings? Is that to be expected?
How do we know when in a flare?
How do we know when in remission?
Should we keep a food diary? What to watch for?

 

[Maya142]

My kiddo also has accidents (in her case, they tend to be early in the morning, like at 5 am). Hers only happen when she is flaring.

It sounds like you might need a second opinion. The accidents can DEFINITELY be caused by inflammation - often, it's inflammation in the rectum/colon. The lack of weight gain is also a red flag -- it certainly does not sound like he is in remission.

Has he had any tests to check for inflammation recently? Fecal Calprotectin? MRE? Blood work?

It sounds like his Crohn's is not under control.

 

[Farmwife]

That's the thing with crohn's. No two kids are the same.
Some kids have a lot of symptoms while others have few to none.
It's only when things get in a dire straight do you realize how bad it can be.
I second the second opinion.:thumleft:
My girl gets scopes every year.

 

[cdnusr]

He was diagnosed 1.5 years ago and spent 7 days in the hospital getting a number of tests including MRI & Scope. That was the only time he has had those tests done.

Since then this is the pattern:

Go to Hospital every 8 weeks. His GI Doctor comes in and checks to make sure he is ok to take Remicade(no fever, etc). They take his blood work. Then he takes Remicade over 3 hours. Then he is discharged.

How do we know when Crohns is under control?
How to know when in remission?

 

[Maya142]

Typically scopes and an MRE would tell you if his Crohn's in under control. The problem with clinical remission (absence of symptoms) is that you can still have inflammation that is silently causing damage - some kids are asymptomatic.

So you really do need scopes before you can say someone is in "true" remission. The goal now is deep mucosal healing, not just clinical remission.

If he was really in remission, his scopes would not show inflammation and biopsies would be clear.

Some kids have raised inflammatory markers in their blood and others don't, so if his bloodwork looks good, that might not mean much. Fecal Calprotectin is a stool test that checks for inflammation that is specific to the gut, so is much more accurate.

 

[cdnusr]

#1. Get a second opinion
#2. Get a yearly scope
#3. Ask about these tests also: Fecal Calprotectin, MRE

What else should we be doing?
Can everyone tell me what remissions means/looks like to their child?

 

[Maya142]

Scopes don't necessarily have to be yearly, but should be done when there are symptoms that aren't going away or some indicator of inflammation - increased Fecal Calprotectin, bleeding, urgency, diarrhea, lack of growth/weight gain -- or really any symptoms that aren't "normal" for your kiddo.

remission varies. Some kids feel absolutely normal when they are in remission. Others still have a few symptoms here and there.

My daughter was in remission for a while. She felt pretty good - no belly pain, diarrhea, constipation, urgency etc. She occasionally had an "off day" - when she had diarrhea or belly pain, but mostly she felt GOOD.

Has he tried using shakes to supplement while you're trying to get him into remission? Many kids drink Ensure/Kids Boost/ Pediasure to help them keep their weight up. Other kids need more broken down formulas -- semi-elemental, like Peptamen Jr or elemental, like Neocate and Elecare.

Ensure/Boost/Pediasure are definitely the most palatable.

My daughter could not gain weight and was not able to drink enough Peptamen Jr to gain. So eventually, she needed a feeding tube and that's when she finally was able to gain weight.