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Crohn's Disease Forum » Parents of Kids with IBD » Another Sibling Another Worry


11-11-2016, 10:19 PM   #1
Pilgrim
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Another Sibling Another Worry

I posted some months ago about one of H's sisters with periodic vomiting. GI prescribed PEG and after the clean out she was fine. No Crohn's.
Now we have our 8 yr old son developing fecal incontinence. He's has a bm, often D, 2-3 times per day. Over the past several weeks I've seen signs of leaking in the laundry and this week full on accident once at home and today had to change at school.
He has energy and seems fine otherwise.
Being the end of the week, I'm thinking I'll give him a PEG clean out in case he is constipated with stool leakage.
Anyone dealt with this? Am I thinking straight?
11-11-2016, 10:27 PM   #2
Maya142
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Hmmm...it's worth a try but I'd see if you can talk to H's GI or their pediatrician after the weekend. Maybe have someone run a FC if that's possible?

Does he have belly pain or any other symptoms of constipation?
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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
11-11-2016, 10:36 PM   #3
Pilgrim
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Hmmm...it's worth a try but I'd see if you can talk to H's GI or their pediatrician after the weekend. Maybe have someone run a FC if that's possible?

Does he have belly pain or any other symptoms of constipation?
No he never complains of tummy aches. We are driving H to her GI appointment on Monday and I plan to beg him for a fcal for my son but I'm not sure how that will work without him being a patient yet. Otherwise we are on a waiting list.
11-11-2016, 11:05 PM   #4
Maya142
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Sending hugs -- I hope the clean out works! Update us, when you can .
11-11-2016, 11:58 PM   #5
my little penguin
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The doc can't order a test for anyone the doc hasn't seen as a patient
Before you do anything -please talk to his ped and get him on the gi wait list the ped /GI can bump up the appt
Can the ped order the fecal cal?

If it's diarrhea from a gi bug etc clean out could make things worse
Call the doctor then make a plan
I know it's hard with kiddo #2 but at least they tend to love slightly faster if the docs know about kiddo #1

Good luck
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11-12-2016, 12:10 AM   #6
Maya142
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That's a good point - it could be a virus. Or it could be a food intolerance - my daughter is lactose intolerant and if she eats something like ice cream, she will spend all night in the bathroom.
11-12-2016, 12:12 AM   #7
Maya142
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Also, if you take him to the pediatrician, they could do an x-ray to check if it's really constipation. If there is a large lump of stool that's stuck, then they can sometimes even feel it when they press on the kiddo's belly.
11-12-2016, 08:07 AM   #8
Pilgrim
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Don't forget we live in a remote location. No pediatrician or GI for a four hour drive. No walk in clinic. Only appointments during weekdays with GP or go to emergency. This is why I do a lot of guesswork and asking the panel here.
I will call on Monday to get him to GP at least they run typical stool tests but only GI orders fcal.
I don't think it's a virus because it's been building for awhile. But food intolerance is possible.
11-12-2016, 02:18 PM   #9
my little penguin
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Unfortunately regardless of your location you need medical advice from a doctor and have him evaluated
Internet forums can offer lots of support including this one
But can't offer medical advice

Hope you can get in with your gp on Monday
11-12-2016, 04:42 PM   #10
Pilgrim
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Yes, as a mature adult I would never diagnose my child based on forum advice, but was interested if anyone had a similar experience particularly the urge incontinence increasing over several weeks. Thanks for your help.
11-12-2016, 04:53 PM   #11
Maya142
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Sending hugs - hope the GP can order some tests. I wish he could do a Fecal Calprotectin for you! But maybe he can do blood work - ESR and CRP?
11-12-2016, 04:56 PM   #12
xmdmom
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Encopresis is usually a symptom of chronic constipation. It can sometimes present when there is extra stress or emotional issues or dietary changes. I understand your concern given family history and the weird ways that IBD sometimes presents.

When there is chronic constipation a clean out is not enough by itself but requires a change in diet, increased liquids, exercise, and bathroom . I agree with the others who suggest a visit to the doctor. Is the GP a good doctor?

http://www.childrenshospital.org/con...resis/overview

http://www.mayoclinic.org/diseases-c...s/dxc-20253391
11-13-2016, 11:42 AM   #13
pdx
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I don't have any more advice to add, but I agree that you're right to check it out. Hope you can figure out what's going on.
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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
11-14-2016, 10:13 PM   #14
Pilgrim
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He's doing well after the weekend and the PEG. We were prescribed PEG for two other children along with diet changes, increased fluids and scheduled toilet times. One child had Crohn's and one was constipated. Having dealt with this as a starting point with the others it seemed like an obvious place to start. I don't know why constipation. We've always included fresh fruits and vegetables in our diet, I cook from scratch, etc... It could be that I've cut out gluten and dairy for my Crohn's kid in the last month and there are many gluten free baked goods that weren't here before. So, diet changes.
Anyway, he seemed to respond to the PEG powder and I am thankful.
11-14-2016, 10:21 PM   #15
Maya142
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Glad it worked! I would continue watch him carefully - just in case any other signs of IBD show up.
11-14-2016, 10:27 PM   #16
Maya142
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How was H's appt.? Hope she is doing well.
11-14-2016, 10:29 PM   #17
Pilgrim
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I will be watching him like a hawk! H has 6 siblings and I feel like it will be a miracle if we can squeak through without another Crohn's diagnosis. Especially after coming here and meeting so many of you with more than one child. GI told me this morning he wouldn't hesitate to scope a sibling if there was an ongoing issue.
11-14-2016, 10:36 PM   #18
Pilgrim
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H's appointment was ok. Her fcal at scopes in June was 3500. Lots of inflammation on scopes and changing location. Right side, terminal ileum and also into the small intestine. Chronic low level inflammation in stomach. Repeated fcal in Sept. After Entocort. It was down to 1500. Still high, but way better.
So we're repeating fcal. If continuing a good drop then just carrying on with Humira. If it's going up we add 10mg Mtx injections plus Entocort to Humira. If it's unchanged he wants to scope again. Not sure I get that!
11-14-2016, 10:46 PM   #19
Maya142
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Not sure why he'd scope again, but I'm sorry to hear her FC is still so high and the Crohn's is spreading. I hope the next FC will give you some insight.

MTX really helped both my girls. It can work really well for some kids - it's a good option.

And there is always Remicade, if Humira does not work.

Sending hugs!
11-14-2016, 10:53 PM   #20
Pilgrim
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Thanks! We tested levels and antibodies for Humira and they looked good. Not sure why she isn't responding fully.
She is symptomatically doing SOOOO well, I would be sad to add something that makes her feel like crud. But, I know the mantra of mucosal healing...and she is very young. We have to keep battling the inflammation.
11-14-2016, 10:59 PM   #21
Maya142
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Let me remind you...the kids who have side effects from MTX are the ones whose parents are complaining about it (including me ). The parents whose kids are fine with it tend not to say as much!

MANY kids have no issues at all or minor side effects that are managed quite easily.

That said, it's definitely no fun to add something when a kid looks good. It's incredible that she feels so good when her insides are so inflamed!

I have VEO IBD is hardest to control . Remicade has more dosing flexibility so that might help. A recent study also showed that it worked better than Humira for IBD.

She also may need a completely different kind of biologic - both Entyvio and Stelara are approved for adults, but not kids yet. I don't know if they would put such a young kiddo on them, but our Children's Hospital is using Entyvio (mostly in older kids and teenagers though).

Will keep my fingers crossed for H. I hope she continues to feel well!
11-15-2016, 07:26 AM   #22
Pilgrim
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I always heard that Remicade and Humira were comparable so I will look for that study! He did talk about a switch at one point but I think he wants to run the course with Humira.
Humira isn't approved in Canada until age 13 but we were able to get access to it for H at age 4. So there may be a back door to Stelara and Entyvio if we need to.
If she does end up with MTX it will be interesting to see if it helps. She only had two weeks with AZA before it made her sick and so hasn't really experienced that class of drug.
11-15-2016, 07:55 AM   #23
my little penguin
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Humira and remicade are close but everyone is different
Remicade has a longer and better track record for kids since you can adjust the dose based on weight and growth
You can't do that with humira only frequency
So essentially the kid gets less and less med with humira as the grow and gain weight

Some also respond better to humira than remicade and vice versa

Ds was on mtx pills for a long time with humira no side effects
Injections at high dose 25 mg -he is having some side effects but mainly dry mouth and throat
11-15-2016, 11:11 AM   #24
Maya142
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It was posted somewhere on the forum. I had always heard that they are about the same too, but this study said Remicade did slightly better.

Of course, every kid is different. Mine did better on Humira.
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