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Crohn's Disease Forum » Parents of Kids with IBD » Why accidents only from 5pm-9pm daily for our 8 year old with Crohns?


07-28-2016, 10:05 AM   #1
cdnusr
 
Join Date: Jul 2016
Why accidents only from 5pm-9pm daily for our 8 year old with Crohns?

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. :-)
07-28-2016, 10:43 AM   #2
cdnusr
 
Join Date: Jul 2016
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?
07-28-2016, 11:14 AM   #3
my little penguin
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Most major children's hospitals have a patient portal so you can readily see and track your child's bloodwork values - they are typically done at each infusion
Not gaining weight is a big red flag for inflammation
Unless he was on pred /steriods in the past 6 months .
When Ds has symptoms that are not in his norm
The his Gi typical orders bloodwork /stool studies first
Then if symptoms continue more invasive tests such as scopes /imaging
Does he have urgency ( meaning he feels like he has to go but doesn't make it in time )or in continence ( doesn't even feel like he has to go - just has a "leaking bumm" as my kiddo puts it )
These are two different things .
Does he have bm at any other time during the day ?
Are the number of bm increasing or just having accidents ?
Any rectal pain ?
Might Help to keep a food diary for two weeks ( I love my fitness pal app for Ds )
To see if things increase or decrease with certain foods ( milk wheat eggs etc...)
Can you call to get a second opinion at another university kids Ibd clinic ?
Going to the same hospital doesn't get you the fray set of eyes needed
We have taken Ds twice for second opinions and our Gi has been completely on board
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07-28-2016, 12:54 PM   #4
cdnusr
 
Join Date: Jul 2016
He does not feel the stool leak out.
He rarely runs to the washroom for urgency visits. Happens but rare.
No pain at all anywhere.
We are in a location where there is only one Hospital. But we are thinking about seeing local Doctor and arranging a second opinion.
07-28-2016, 01:48 PM   #5
my little penguin
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You can have records review ( no visit required) at one of the to three hospitals if you are in the US
Boston childrens
Children's hospital of Philadelphia and Cincinnati children's hospital
Boston childrens will even do the review online for you
Not sure but they do see international patients so they might do a records review tgat way as well
07-28-2016, 02:00 PM   #6
my little penguin
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Is he seeing a pediatric Gi at a major Ibd center ???
07-28-2016, 05:11 PM   #7
cdnusr
 
Join Date: Jul 2016
We are in Canada. I think Toronto is the biggest one. We are not near there but can go.
07-28-2016, 05:19 PM   #8
my little penguin
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Tagging pilgrim and Tesscom they both know the Canadian system
Toronto sick children is the place to be from what i have heard
I know Tesscom has gotten mre done in the US and taken them back to Canada

That makes things a lot more difficult since the system of who /when your child gets to a specialist is different
Is he seeing a pediatric Gi or just a pediatrician or gp for his crohns???
Tesscom can help with getting results etc...
11-09-2016, 10:41 PM   #9
Pilgrim
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Location: Ontario

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Bumping this and just wondering what your outcome was.
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