Crohn's Disease Forum » Parents of Kids with IBD » How honest are you with your child?

03-31-2013, 03:38 PM   #1
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How honest are you with your child?

I've been reading a lot about Crohn's disease, since my son was diagnosed.
He doesn't really want to know all the bad stuff, so I read, learn and report the good stuff, mostly. I do mention some bad stuff from time to time, but I know that there is plenty that he just does NOT want to know.

He seems to be handling it all so well. He's been upbeat and rarely complains, has started working out. He even cleaned his room from top to bottom! And since it is helpful to think positively, I believe that I am doing the right thing in sheltering him from much of the bad stuff, but I'm not 100% sure.

03-31-2013, 03:55 PM   #2
Jim (POPS)
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I think you are doing the right thing, but, if your son ask a question about crohns that you should tell hin the truth. If you were to hide anything when he ask you a question and he finds out latter he will not trust you later on.
I must he hard , I don't know if I could do it for a child. My heart goes out to all the kids and there perants that have to deal with it.
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03-31-2013, 04:14 PM   #3
my little penguin
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Have you had him read Pete has crohn's ?
That presents things in a positive way .
We provide info as needed.
DS - -Crohn's -Stelara -mtx
03-31-2013, 08:25 PM   #4
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I can't remember how old your son is Amy, we are pretty honest with my son but you know what is best for your son and how he handles things.

My son likes to know every last detail about things and will state his opinion about treatments but he knows the final decision right now is his parents and his GI's. Last time we were in the GI's we were discussing moving to a biologic and Jack told his GI if he had to do a biologic he would rather do remicade because it would be easier then giving himself a shot.

But then he has grown up knowing about Crohn's since dad has it and has always heard about food making dad sick, dad's medicine so that may be part of it as well.

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
03-31-2013, 10:04 PM   #5
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You know, my son has surprised me. Initially when he was first diagnosed at age 8, I told him very little, just the basics. He's rather sensitive so I didn't want to freak him out about anything (i.e. surgery). As his disease got worse and it started to become evident that surgery was on the horizon, he was very open to the idea. He went into his bowel resection with a huge smile on his face and was excited. I didn't see that coming!

With meds, I don't tell him what the side effects can be. He just knows to tell me anything and everything that is different from yesterday (or even an hour ago). Why worry about things that may not happen?

The hardest part is sitting with the GI who may be rattling on about things that I'm not sure my son is ready to hear. For the most part a little head shake or wink catches their attention and they start talking in code. As he gets older and more mature, it's been a little easier.

And, quite honestly, if I do need to be honest about a yucky topic (enemas!) I try to use success stories from this forum. Like "Jack in Idaho who is your age had this happen to him too and this is what his family did that worked well."

The toughest and most honest thing I've ever said though is simply, "I don't know."
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
03-31-2013, 11:50 PM   #6
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I have always told my kids what they need and have wanted to know. I answer all questions honestly and that includes saying I don't know. But I don't dwell on the what ifs, I don't see the point, if a bridge does indeed crop up, well we cross it when we get to it.

As has been said, you know your lad better than anyone and it sounds to me that are handling things perfectly well.

Dusty. xxx
04-01-2013, 07:57 AM   #7
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Agreed...age appropriate, of course, but when Izz was facing surgery, we told her everything...she is a worrier as well, so there are things in life I don't tell her (often along the lines of current events, like Newtown), but I feel that she needs to be informed. I think that expecting a lot out of her will pay off in the long run; when she transcends into adulthood I want her to be capable of managing her own medical care; ask questions, and be an active participant in her care. That being said, I don't go into details. Tacro can cause kidney failure...I don't tell her that she could need a transplant-I just tell her that it may harm her body, which is why we are required to do monthly labs.
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
04-01-2013, 08:18 AM   #8
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Our son is 13 and is spoiled with my hand me down iPad ... he has researched crohn's on his own and sometimes surprises me with what he knows and the questions he asks. He even joined this forum (probably to keep tabs on me). His avatar name is "Obi Won Crohnobi" (he still has his sense of humor). When he asks a question, we answer it as best we can with the facts.
Son Alec 13yrs old - DX 11/2012
Methotrexate 12.5 MG Oral & Zofran weekly
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04-01-2013, 08:25 AM   #9
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Agree with all the above.

My son has just turned 14, diagnosed at 12, depends on treatment required, when he had surgery the surgeon spoke to him about it, and told him what could go wrong and might have to have a bag for a while, and he said thats ok.

Again he looks at stuff on the web, on his ipad etc, asks questions and i answer as honestly as possible, if i cant i ask his nurse or consultant.

Good luck x
04-01-2013, 08:36 AM   #10
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My son, Stephen, was diagnosed when he was 16 (he's now 18). I've often wondered the same thing! At the beginning, I did try to shield him from the 'worst' case possibilities both from the disease itself and from the treatments. It's difficult enough for us, as adults, to hear that diagnosis and come to terms with what it means for the future... While I knew I couldn't always shield him, I was hoping to give him time to adjust to living with crohns and deal only with the 'here and now' (and I'd do all the worrying about the future!).

However, I didn't lie to him nor hide anything. They have lots of info at their fingertips and you have to believe that they will be curious enough to look online at times. So, I was always honest about any questions he had - I didn't want him to feel that he couldn't ask about something he'd read and also felt it was important that he understood the consequences if he didn't follow through on his treatment, etc. I didn't force him to talk about it but we (him and I or as a family) would often discuss issues openly, casually, etc.

I did sometimes feel it was a bit of a juggling act - wanting to get information from the doctor but worried about asking specific questions in front of Stephen! So, while I continued to ask my many question! , at times, I did tone them down a bit (ie, didn't specifically ask about cancer risks when discussing possible medical treatments!)

I have been surprised by his knowledge, especially since we transferred to an adult GI (when he turned 18). He has asked very specific questions, has used and understood specific terminology, etc.; clearly, much more aware of the possibilities of crohns and the side effects of medications than I expected.

You know your son and how much he 'wants' to know. I'd only 'force' conversations or his awareness of issues that deal with his health, ie he has to tell you about a new symptom or side effect, what can happen if he doesn't take his meds, etc.

I'm sure you'll know the right things to say...
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-02-2013, 02:29 PM   #11
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I too, have held back on some info. For example, I haven't told her every side effect of 6MP, but have told her that she has to do labs to monitor it to make sure that it isn't hurting her liver or suppressing her immune system too much. I do not lie to her, but will purposely not tell her that we are planning to give her vaccinations at her pediatric checkup, because she stresses out majorly, and can deal with it better if she doesn't have to worry about it too long. On the other hand, coming into this whole ordeal, she was not doing well and she was always sick. I told her that she could see the gastroenterologist, but that it would mean doing some testing and I explained about what that testing might be like. She decided then that she wanted to do "anything" that would help her to get better. Thankfully she is doing much better.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-02-2013, 11:00 PM   #12
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As I read these posts I realize what a great bunch of parents are a part of this forum! I feel lucky and blessed to have this outlet.
I also answer his questions but stay positive. I don't give unasked details. (Like his recent biopsy results...just told him doctor wants to 'enhance' the why having to add methotrexate) I never give details about drug side effects or warnings. He's too young. He listens so intently at his appointments so I also have to give the GI a nod when she's going on and on too much. He's growing up and I see him taking ownership of this whole thing. He used to be so he feels comfortable talking at an appointment.
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-03-2013, 12:08 AM   #13
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We are right there with everyone else.

When Gus was younger, I didn't really tell him much about the tests or treatments, except that the doctor's were working really hard to figure out why he is hurting and trying to make it stop. Back then the biggest challenge was trying to teach my 5 year old how to swallow gigantic pills.

Along the way, the chose to "tune" the doctor out when he was explaining things. There were many days when I had wished the "nice nurse" would come and take him out of the room so I could have a more direct discussion with his doctor. I did feel like the doctor didn't understand that he was too young to be faced with some of the information we all have to process.

As he has gotten older (will be 13 next week), he is beginning to take more of an interest in understanding things. He is still pretty quiet in the appointments, but asks more questions afterwards. I do the best I can to explain, but am careful not to give more than he is ready to understand.

I also have to be careful to follow-up with "we will just have to see how this works. It will either work or it won't. If it doesn't then we will move on to something else." I don't want him to have the misconception that there are any guarantees with the treatment options.
04-03-2013, 04:50 AM   #14
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Lucy knows she has crohns but thinks the are very small very green beings living in her bum and belly. For her getting into remission means her crohns will go to sleep, so that's why she meets the GI and takes meds to make them go to sleep. She knows that she has to get bloodwork done to make sure the meds are only putting the crohns to sleep and no other part of her. She is only 4 so she has a good grasp of what is going on. If she is getting a procedure or infusion we explain before hand exactly what is going to happen and she is always ready for it. We also read 'toilet paper flowers' every night .... She knows it by heart at this stage! I am somewhat dreading her getting older and having to explain the potential side effects of some of the drugs.
04-03-2013, 08:43 AM   #15
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I think kids ask questions that they are developmentally ready to hear the answers to. And I always address any questions honestly.

My son doesn't know that he could have a bag someday or that most people with crohn's require surgery. If those realities looked as though they might be on the very near horizon I would start discussing them. I don't think it serves a purpose now. It would be like talking about your worst childbirth stories to a 14 year old girl.

Side effects I talk about only a little. I am not willing to let him make his own medical decisions at this point so I don't feel like the information would do much for him but worry him. When he is old enough to start making those decisions I think his brain will be mature enough to process them.

Honestly, my husband doesn't know half the stuff I know about the 'what if's'. But it suits his personality. He isn't going to worry about things that might not happen in the future. It's a fine line though, because you have to assume that what ever is working right now will not work at some point and it's better to have a back up plan in advance.
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg

Last edited by Johnnysmom; 04-03-2013 at 07:46 PM.
04-03-2013, 06:52 PM   #16
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As my daughter is already 17 years old, she knows much or as little about Crohn's as she likes. I push the sunscreen issue because of the aza usage and she will answer I know. She currently has mild sunburn in an couple of spots she missed on the back of her hands.

Sometimes she surprises me, in her knowledge as with the shingles, she first told me no couldn't be shingles as first dr said wasn't. Later said these symptoms I had last week they were maybe from shingles (she has used Mr google decided she did have shingles).
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-03-2013, 07:25 PM   #17
my little penguin
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WE have discussed with ds that some people do need bags and what they were etc...since he was in the room when the 2 opinion Gi flat out told not to let anyone near his rectal prolapse or he would have an ostomy. DS of course wanted to know "what that was?"
Once I told him he thought it was "cool" since he wouldn't have to stop playing and spend so much time in the bathroom. ( of course he was only 7 at the time)
04-04-2013, 07:36 PM   #18
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Grace knows that theirs a boo-boo in her belly we're trying to get better. I also said this boo-boo might come and go but we will do are farm hill best to make sure it stays gone as long as possible.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
04-04-2013, 07:52 PM   #19
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I'm very honest with A. She does better with things if she has time to mentally prepare for what will happen. She's only 8, and doesn't have an official diagnosis of IBD yet, so the information I give her is basically about upcoming tests and the medications she's taking. From the time my kids could talk I made sure they knew the name of their medications and the dosage. I just think that's important. My own father doesn't have a clue what he takes which is just irresponsible and sad (in my opinion). I don't discuss potential side effects with them, but do let them know that if something doesn't seem right they should tell me.

Funny story - A just started taking Periactin (liquid form) and was reading the bottle as I was mixing her Miralax/juice. She got very upset and started screaming, "Why are you giving me this stuff? Don't you know it can cause diseases?!" I looked at the bottle and bursted into laughter. "Not diseases honey. Dizziness!" Silly girl.

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