Crohn's Disease Forum » Parents of Kids with IBD » How much to share with kiddo?

05-28-2014, 09:42 PM   #1
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malorymug's Avatar
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Location: DFW, Texas

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How much to share with kiddo?

I have a very intelligent and responsible 13 year old boy recently diagnosed with CD in April. We have been fairly open with him about crohn's disease, although not listing the worse case scenarios.

He is on his second week of 6-mp and some common side effects are popping up. I'm not sure how much to tell him about the potential side effects. Tonight he showed me two mouth ulcers and we found a rinse that was right for him. But I'm not sure whether I should tell him this is part of the medication or keep him in the dark about it.

How do you handle explaining potential problems with your kids? Thanks.
Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk

previous meds:
6mp 50mg
Prednisone 30 mg
05-28-2014, 09:51 PM   #2
AZMOM's Avatar
Join Date: Nov 2010

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Just my two cents..... I think it is okay to say "Let's keep an eye on those. We want your medication to work for you but sometimes other issues can come up. If you notice anything else, let's track it so we can talk with the doctor about it."

Now will that work for 13? I'm not sure? It works for 11. I would never just put the side effect sheet out in front of Claire because she would freak. But she likes the control of helping put notes on a calendar and/or making list to talk to doc about at visit.


Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
05-28-2014, 10:18 PM   #3
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Location: Minnesota

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My son was dx'd at 8 and we were on a need to know basis back then. Around 11 he started asking more questions and by 12 was googling on his own, but at the time, he was pretty sick. Now at 14, he's aware of everything and his increased risks of certain things, but we have a why borrow trouble philosophy that he seems to be ok with.

While some of the side effects can be scary, we've always just told him that every side effect doesn't happen to everyone. I've also used stories of the kids here on the Forum to stress how they all have the same disease, but all present so differently.

My son is a big on math and science so presenting him with statistics on worst case scenarios helped put things in perspective along with sharing some of the success stories that families have posted.
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
05-29-2014, 04:42 AM   #4
my little penguin
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The other thing is to talk it over with the doc any new symptoms your seeing.
Since sometimes what you think are drug induced side effects may be your kids disease course .
Mouth ulcers typically indicate something is going on in the intestine still.

Good luck

DS is on a as needed basis but he has read the ccfa comic ( pete has crohn's )
And Ibd and me coloring book
DS - -Crohn's -Stelara -mtx
05-29-2014, 05:44 AM   #5
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malorymug's Avatar
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Location: DFW, Texas

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Good point, mlp. Is there any way to know the difference between disease and drugs effects? I'll give the doc a call this morning.
05-29-2014, 10:39 AM   #6
Jmrogers4's Avatar
We found it always best to update the GI and let him decide if it is disease activity or side effect.
Jack already had a pretty good idea of the disease before he was diagnosed as his father has Crohn's but we did tell him not everybody's disease is the same and just because something happened with his Dad doesn't mean he would have the same thing.
The GI, as well as ourselves have always been honest but basically glossed over any cancer risk just saying it was extremely rare but like Mehita's son he is very science oriented and wants to know how things work.
We've always explained the basics and answered his questions honestly and let him decide when he understands/has enough information - basically when he quits asking more questions and have always told him if we didn't know the answer to something that he should ask his GI.

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

Husband dx Crohn's 3/1993
currently none due to liver issues
06-02-2014, 08:45 PM   #7
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SupportiveMom's Avatar
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Location: Toronto, Ontario

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Azmom said it well with "keeping an eye on things"

When a potential side effect shows up D has gotten more anxiety over it so we try to downplay it as an issue the best we can unless it is something needs quick attention and let the doc talk about it to her.

It is a hard balance making sure they understand but not scaring the daylights out of them but getting them prepared for adult care.

Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone ☆

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