How much do you tell your kids?

[Tesscorm]

How much do you tell your kids regarding the consequences of not 'respecting' their crohns, of the risks of medications, etc.?

Sometimes Stephen just isn't as concerned about it as I am! (What a surprise! 17 year old boy :headbang: vs. mother :emot-nyd It's just so worrisome and frustrating sometimes!

- he has his formula as per his schedule BUT forgets supplements a few times per week
- if I'm not constantly on about his diet, it sucks (today - no breakfast, pizza for lunch, leftover ribs ONLY for dinner - wow, what a nutritious day and, I bet, just so easy to digest!:ywow
- not enough sleep
etc., etc. Fairly typical teenage stuff but not great for a teen with crohns!

When I try to explain about future consequences, he just doesn't seem too concerned.

I don't want to make dire predictions about progression of the disease or the side effects of needing additional medications and completely freak him out! Especially, as many of my concerns may be emotional and driven by mom worries. But, maybe he needs to know more to motivate him to 'respect' his crohns and not take it for granted.

What do you think? Or what have you done?

Thanks:redface:

 

[DustyKat]

Ah Tess. Sarah went off the rails her last year of high school and I well remember saying that a 17 year old with Crohn's is no different to a 17 year old without Crohn's...they are invincible.

I think the only thing you can do under the circumstances Tess is arm them with the knowledge but unfortunately what they do with that information is up to them. I use to introduce it to Sarah via brochures, periodicals from the Crohn's and Colitis association, bring it up casually in conversation by saying things like...I read something really interesting today, I would say we are trying this food because it is not only healthy for all of us but has the added benefit that is good for our gut, all that sort of thing. I basically used what ever method i thought she may be receptive to. You know Stephen best and what he is most likely to go away and read/think about. I have no doubt in my mind that these kids may very well be looking up things for themselves on the net.

It is such a difficult age, so social and peer driven.

The GP said to me after we discussed the issues she was having that she had to talk about it, he was insistent about it. I basically told him he was too black and white and that he had no idea what it was like to deal with a child with Crohn's, there was no way I was going to break the few lines of communication that were open. That consultation did not end well, I told him to keep his mouth shut, I walked out and slammed the door behind me...Sarah did get back on track about 6 months into university life. She has made astoundingly difficult and life changing decisions since then and all to the benefit of her health.

Matt is a different sort of kid. He is introverted and thinks constantly. For him I merely put a suggestion to him, give him a book or tell him to look something up and leave him to it. I have to trust that he will do the right thing because to tell him what he must do will only result in shut down.

I choose my battles Tess. I only say what really needs to be said about Crohn's, the most important things, like...have you taken your meds today?...that way I don't come across as nagging. :lol:

I understand your fears about the future only too well Tess. You are doing wonderfully well with your boy and I know whatever path you decide to take with this it will be right.

Dusty. xxx

 

[Jennifer]

In this case they really learn on their own. There's only so much you can tell them or show them but until it happens, they still just want to be a normal kid. I think acceptance happened right before I was about to have my resection (I was 17). I partied and drank every week, started smoking and generally didn't care cause I figured the medication was doing its job. Unfortunately I didn't help the medication along any so they piled on more meds and at higher doses until I was far too sick to party anymore and was forced to have surgery.

Not everyone will get or need a harsh wake up call like that but a wake up call is needed and its something that only they can do for themselves.

Same as Dusty, my mom always asked me if I took my meds. I'd lie most of the time that I had already but would take them right after I talked to her since she reminded me. When I was younger of course my mom had the pills in her room and she would bring them out to me and watch me take them.

 

[izzi'smom]

Ah...Tess. It must be hard.
They *don't* fully understand the consequences. I guess they aren't wired to yet. I remember being that age and not caring what my parents said.
No advice, just (((HUGS))) your way. It's always a journey, this ride we are on as parents of IBDers. It won't get easier as my 5 year old grows...I guess the struggles will just change.

 

[xX_LittleMissValentine_Xx]

I can't imagine how difficult it must be to have a child with Crohn's. But I can tell you what it is like to be a 17 year old with crohn's! Anyone of us with crohn's wants to live as normal life as possible. At 17 its even harder, as friends my not be mature enough to understand or help you. You just want to go out and have fun like everyone else.
To be honest I think you have to let him learn for himself. He knows you are there for him, and like all 17 year olds he is learning to be independent. If he is feeling well then he may be able to eat badly and go to bed late without feeling the consequences. So why shouldn't he? It may just take something to happen for him to realise how his behaviour can effect his illness and then he may choose change things. For me I stopped taking some meds when I felt better, and then I felt worse again. That showed me how much I need them and I have been good at taking them ever since.
But as Dusty said, you will know him best and know the best methods to guide him.
Just remember he is going to have his own pace at accepting things and wanting to learn about his illness.

 

[AZMOM]

You have already receIved some great advice. I think just like the damned disease is different for every kid - so is how they will learn about it. Even now, Claire at 8, we have an occasional battle of wills so I can only imagine 17. (PS all she would eat last night was toast sprinkled with cinnamon and sugar).

Hugs,

J

 

[imaboveitall]

Totally unique to each kid of course but in the interest of sharing experiences only:
V is also an an introvert and we are not an outwardly emotional family in general, so little discussion here re: emotional impact.

As far as how much to tell...I have told her she needs to research on her own but she has zero interest in so doing, though she did read all the literature that came with her fancy Humira starter kit and remarked re:the photo on the box: "oh look people having fun camping in a tent...I guess that's supposed to distract me from the safety warnings"

She just does whatever we tell her and goes along.

She does understand due to my uncensored style of speaking when it comes to med matters, that surgery is a common reality for IBD pts, she knows the drugs are dangerous, and she knows she was close to death right around dx.
We discuss things in a very matter of fact tone, and with detachment.
Not recommending this, just saying it's how we do it.

 

[kimmidwife]

Tess,
Teens are definitely hard and I guess as the others said they have to learn as they grow and become more and more independent. Caitlyn was giving us problems taking her meds for a while always saying she took them even if she did not so I bought a daily pill keeper that has all the days of the week and Am and Pm on it. Now I always know whether she has really taken them and it helps her to because a lot of times she could not remember what she took and did not take. I know that may be more difficult when it comes to formula. Maybe you could actually label the cans Monday tuesday etc and tell him to take the can with that day on it so you both know he has done it. I know we do need to step back and let them achieve some independence and learn from their mistakes. I agree it sure is difficult though!

 

[rygon]

although im an oldy at 28, sometimes you just need days like that. Its very stressful living with this life and having an "off day" where you can just chill out, eat junk, forget to take your medicine etc helps so much mentally.

I dont do it regulary as i know it will come back to bite me, but im sure he is aware of his body and how he is feeling, and that certains food will be bad for him, so as long as he has all the correct info, let him be, and let him learn from his own mistakes

 

[dannysmom]

At 17 I think they should be fully aware of the disease and its potential complications. I also think most patients seem to figure out their diet - what foods to eat, to avoid, etc. - on their own since it vaires so much from patient to patient.

 

[Jennifer]

You'd think that dannysmom yet my own story proves otherwise. Knowing certain possibilities doesn't mean you'll completely change your lifestyle and I had already been diagnosed with Crohn's 8 years prior.

 

[dannysmom]

You'd think that dannysmom yet my own story proves otherwise. Knowing certain possibilities doesn't mean you'll completely change your lifestyle and I had already been diagnosed with Crohn's 8 years prior.

I understand. Perhaps my point did not come across. I just think the patient (at 17) has the right to understand potential complications. I did not say anybody would completely change their lifestyle ... especially diet ... which seems to vary for many patients anyway. (ie - Pizza and ribs may bother some but not everybody)

 

[Tesscorm]

Thanks everyone for the great responses and support! Eveyone's insight is so bang on and it certainly helps to get that little bit of reassurance.

It feels similar to when my kids were really young and we tried to teach them about 'strangers' - you want to get the point across re the dangers but not to the point that they are afraid to move from your side. I feel the same way with the Crohns - I want him to be aware that bad things can happen but, again, not the point that he's afraid to enjoy life! :ybatty:

I think, for the most part, I have been treating him as everyone has suggested - guiding, suggesting, giving him space to make his own decision, etc. But, then you start second guessing yourself - should I be firmer, am I being negligent by allowing him to make a mistake while knowing the conseuqnces, maybe I haven't taught him the consequences, etc.???:yrolleyes: I guess, as I can't take away the disease, I'd, at least, like to take away all the worries from him. Of course, this would require that he just 'do as I say' and not ask questions! Certainly, not asking much of a teen boy! :rof:

Crabby - you made me smile... I still sometimes lie to my mom when she 'reminds' me of something and then run out and do it! :lol:

Tough enough to let them grow up and become independent, watch them make their mistakes but then move on... just a little bit tougher when their mistakes could impact their health! :eek2: Just needed a reminder that Crohns doesn't change that!

Thanks everyone!:smile:

 

[imaboveitall]

Having already raised teens before Violet (my two oldest are now 29 and 28) I was experienced with how they roll.

Hands off vs nagging always yields better results.

I took this approach re: many areas of their life and they sometimes made good choices and sometimes not, but never made the same bad choice twice as I never bailed them out (not literally as in jail :lol: Their bad choices were more in line with not doing school projects on time etc).
V knows she can take charge of her med care/decisions anytime but she would rather NOT. She is more of the passive compliant type.

Don't stress his diet so much, either, Tess. Unless certain foods upset his gut, I'd let him eat what he wants. He's getting nourished via the formula, everything else is just additional. That's why I LOVE the formula feeds, one less stress to obsess over. :tongue:

 

[Tesscorm]

Oh, absolutely, the formula has taken a huge worry away from me!! As he's always been a picky eater, the formula has really taken away that concern - crohns or no crohns! It's more his diet 'style' I get worry about, if I'm not on him, he just 'forgets' any diet-related common sense! Another day last week, ate nothing for breakfast (okay, usually doesn't as he's had the feed all night so not hungry nor necessary) but, that one night, hadn't had the feed, didn't have breakfast, went out late for lunch (1:30ish) with my mom, she took him to a bbq chicken restaurant and she said he was so hungry he was 'shovelling' the food in! :lol: Okay, not so much an issue with the food itself but, not eating for 15+ hours and then jamming in chicken, fries, bread, gravy just can't be good (for anyone!!)! Ugghh!

So, it's more the way he eats, rather than 'what' he eats. We usually eat fairly healthy and as 'junk' food doesn't seem to bother him, I'm fine with him having it once in a while but...

He's on school break now, so was up late... Last night, past midnight he came to ask me if we had any ground beef and Hamburger Helper at home - he'd seen a commercial and now was hungry!:ywow: OMG!! Who eats that at midnight?! I told him to stick with cereal! :lol:

And, it's so funny because my daughter is the opposite! She checks the fibre and fat content of all foods, always avoids junk foods, cooks with the coconut oil I bought for Stephen, eats smaller meals every 2-3 hours, etc. :ywow:

 

[imaboveitall]

With my first two, I was a food fanatic. They were raised vegetarian (my son started eating meat in HS, my daughter never did and is vegan now for two years), I made my own soy milk, baked bread, they had no refined anything etc.

With the second batch (14 years later) I tried to go that path...V wasn't having it. The time she went 36hrs with only liquids at age oh...2 or so, I gave in and started giving her whatever she would eat. I recalled an experiment wherein they had kids in an orphanage, (preschool age) they presented them with an array of foods daily both nutritious and "junk", and let them eat whatever they wanted. The researchers noted that the kids would go on "binges" or tangents of a certain food, then not touch it again.
They concluded that, if given access to a wide variety if foods, kids will self regulate and maintain nutritional status.

This has always been V's way. She will "tangent" eat. She'll eat a ton of say, carbs, then not. She says she craves what she needs. She was craving calcium rich foods recently and of all things, cinnamon which she HATES.
So we made cinnamon caps and she takes a tablespoon's worth daily...no more cinnamon/calcium craving.

I believe SOME (not all) kids instinctively know what they need, nutrient wise and will crave foods accordingly.