Faking Crohn's

[Mehita]

Have your kids ever used their IBD as an excuse to get out of something that they didn't want to do even though they weren't really sick or having symptoms? They simply didn't want to go to lessons or the dentist or wherever so they pull the IBD card.

DS knows that any little symptom raises red flags around here. Lately it's been raising more eyebrows than red flags though. I know he's not sick and have lab work to prove it. I know he's faking it to get out of doing certain activities. I don't know how to describe it... but sometimes as a parent you just know. Ya know? :lol:

And he's starting to catch on that I know. If I weren't in the midst of it right now, this might actually be funny... this little back and forth thing we've got going. Did I mention he's 13?

It just really bothers me that he's trying to get away with this. It also bothers me that, while I'm 99% sure he's fine, what if he really isn't? I don't ever want to minimize real symptoms, but the crying wolf thing isn't acceptable either. I'm standing my ground and still making him do or go to whatever he's protesting, but it hasn't changed anything. It just usually makes us late for appointments.

Has anyone else dealt with this?

 

[my little penguin]

We always treat it matter o factly
If your stomach hurts - ok what is the number
But we have to still get in the car.
You can have perfect labs and still feel bad at least in ds case.
He never gets to get out of anything though
Feeling nauseous ok rest a bit but when you get up your room still needs cleaned.
Not a lot of sympathy since this is his life now and he will still have it as an adult.

 

[my little penguin]

One more thing to remember is they are kids and kids like to push limits especially 13.
As long as your consistent and have him make a note of it in his daily symptom journal for the doc i think it would eventually like all phases disappear .
If not you and he could see if there is a pattern for not feeling well.

 

[ChampsMom]

Hey Mehita,

I understand how you feel, as I have felt the same way.

Shortly after Alex was diagnosed, and just days after he was released from the hospital (the first time) I found myself in the precarious position of doubting whether he was "using" his illness to avoid doing something (we were going to Church). We had only been out of the hospital for 24 hours and he had spent the day before feeling great. Knowing that getting up early was not on his top 100 things to do in a day, when he started complaining that he didn't feel well - my response was pretty harsh and I told him he was going.

We were only about 15 minutes into our Sacrament meeting (they were passing the bread) when I heard a child choking... Cringing slightly and waiting for the wail of child, I quickly felt sorry for the Mom... UNTIL someone tapped me on the shoulder and said, "Shell - it's Alex!!!" Jumping up I handed my (then) 11 month old to a woman sitting behind me and ran for Alex. There he was on his hands and knees, sacrament tray beside him, losing it. When I asked (stupid question, I know...) "Are you okay?!" He slowly turned to me and said, "I *told* you I didn't feel well." That night we were back in the hospital for another 3 weeks.

That instance led to a conversation that both Alex and I have vowed to honor. He's never to use Crohn's as an out. IF he doesn't want to do something, just say so and we will work through it. IF he says he's sick, I'm going to take it seriously and act accordingly.

Having said that, I know there are times that he is too sick (or tired) to get up at 5:15 am to attend his Seminary (Youth Scripture Study) class but will feel fine at 8:45 pm to attend hockey practice. And sometimes it is just the opposite. It is what it is.

Because we have been through all of this, I have found that he and I have a relationship and an understanding (trust) that is unlike other parents & children.

So many of our kids seems mature above their years, they've been through so much... At 13 DS is old enough to have that trust conversation.

Good luck!

 

[Clash]

I agree with MLP, kids start to push limits when they become teenagers and it can be a lot easier to impose your will on an adolescent than on a teen. When you push their natural tendency is to push back.

I've taken the similar approach such as ok if you don't feel well enough to clean your room that is fine but no keys or going out until the room is clean. It may not get cleaned that day but since at his age it is all about "the social life" it does get done.

 

[my little penguin]

One thing about the number question
He assigns a number so I know when it's bad
1-2 is annoying pAin
3-4 is not good but he can mostly cope
5-6 he is huddled in a ball or puking.
He is always honest with the numbers so i
Can adjust what has to be done.

We have the dont feel well on Sunday too but honestly
Seeing him and how he acts he truly does not feel well.

 

[Tesscorm]

Great advice!

Even at Stephen's age, he's tried 'oh, I can't do that now, for some reason, I feel REALLY tired.' I try to do like MLP but also worry 'what if it is something???' But, what I've found is that it magically clears up once there's something FUN to do! :ymad:

I had juvenile osteoporosis when I was 5-7 years old (couldn't walk for a while, lingering bone weakness for a couple of years, etc.)... I very clearly remember, once I was well on the way to recovery, still using the 'ohhhh, my legs hurt. I can't walk to the store.' Or, in the cold winter months 'mom, my teacher makes me go outside at recess/lunch, it's soooo icy... could I slip and fall and break my bones? Do you think I should stay inside?' :lol: And, I KNEW my mother couldn't 'prove' it one way or the other and would be worried enough that I might get my way! :redface: Most of the time, my parents did as MLP... 'too bad, walk carefully!' but, kids certainly know how/when to try it!

 

[Tesscorm]

Just read ChampsMom's post... having that conversation is really important and I think all our kids will understand the seriousness (at least, most of the time).

I did similar with Stephen, not necessarily for trying to get out of things but, for the first few months after diagnosis, I was constantly asking him 'is everything ok?'. He was patient but I could tell it was annoying him and I was being a constant reminder of his crohns, even when he was feeling well. So, that New Years, I sat down and spoke with him and told him my New Years resolution was to STOP asking him how he was all the time BUT he had to promise me he would tell me if he had any symptoms I should be aware of. It's worked really well... it's taken pressure off me because I don't need to worry until he says so and I do believe he will tell me (maybe a day or so later but... :lol

Because we have been through all of this, I have found that he and I have a relationship and an understanding (trust) that is unlike other parents & children.

I've also found this to be true...it's as if there's an implicit understanding that we're partners in dealing with this.

 

[Amy2]

My kid doesn't do anything he doesn't want to do right now. Seriously. I know that he will be an adult soon enough and have to deal with a lot more, but right now I'm going to baby him. The other day, he didn't have the energy to check the mail. Lol. But, I notice that he has energy to do fun things...

 

[Kev]

I'm a parent, but my children (now grown) don't have Crohns. I do. Just wanted to toss in my 2 cents worth. (the penny has been phased out here, so 2 cents isn't worth 2 cents). I endeavoured my best not to let the disease own me.. but it didn't always like to conform to my strategy. There were times when it was winning, and I didn't want it to. There were things I 'really' wanted to do, so I'd force myself.. push myself, often too far, too much. And I would invariably pay the price. There would be other times when... well, there'd be things I wanted to avoid, postpone, get out of altogether, AND my Crohns would hiccup. Hey, excuse enough for me. So, is that the same as using the disease as an out.. an excuse? Yes, if life is just black N white. But the disease will still be there the next day, and the day after.. and so on and so on. I figure people are just people, and procrastination is a part of anyone's life.. whether ill or not. Sooner or later things have a way of balancing out. And kids with this disease will play it up/down as they see fit.. same as healthy kids will play up/down flu, measles, chickenpox, etc..
Anyway, if you see a pattern where kids are too ill to do something unpleasant, but fine to do something fun... it may be that they are playing you.. or it may be the motivation of the fun thing has them pushing themselves... or a bit of both. Just normal 'human' behaviour. I have always held that, in coping with this darned disease, along with all the bad things that come with it, you get the right to decide what it is you need to get through it... and no one gets to second guess you.. whether that be parent, care giver, or significant other. Fact of the matter is.. these latter folks, no matter how much they care... are on the outside looking in... and no matter how much they feel, they can't live it. Only the person with the disease can do that... and, believe me, I've been there, and done that. And no one with it would wish it on another living soul. OK, I'm done now. For what it's worth.

 

[zilla7777]

I think you pretty much hit the nail on the head Kev.

I will say though that (as a 17 year old,) I do find it frustrating when I have to play down how bad I am feeling to alleviate stress on parents, or have them play it down to the point I'm unsure of whether I'm really bad or not. (Similar to convincing yourself things are fine, when they aren't.)

I am very honest with my parents, and I do have a very good relationship with them. I just feel as though they just don't want to hear it, and although I know "Hey, I think I need to take the traumatizing roller coaster of a medical system again" is something no parent wants to hear, it can be really distressing when they are kind of in denial.

Just trying to present a different perspective I guess. I entirely understand though how kids could attempt to use it in their favour though.

 

[DustyKat]

My two were a tad older when diagnosed 14.5 and 17.

When it comes to Matt I have to be honest and say he is so straight you could rule a line with him. What you see is what you get and there is no second guessing.

Thinking back on Sarah I don't recall if she used her crohn's as a reason for not doing things. I think the reason for me not being clearer about it is down to me. Because she was so ill and we came close to losing her my outlook changed, the things that I would once have been onto her about I no longer did. I just didn't stress the small stuff anymore, meaning my small stuff, not passing judgement on others here! :lol: There may have been things in which she used her Crohn's as a reason for not doing or attending but I accepted what she said and didn't think much of it.

I hope that makes sense!

Dusty. xxx

 

[Mehita]

He just confessed. He admitted he pretends sometimes so he doesn't have to go or do certain things, so we just had a little discussion on trust. Certain things are not optional though (medical, dental, church, certain family events) because in return for me trusting him, he has to trust me that some stuff is really, truly for his own good... he just may not realize it for 5 or 10 years or even until he has kids of his own.

I do think he needs to talk to someone about his anxieties though. He gets so worked up about little things sometimes. While not Crohn's related necessarily, it's not helping him either to create this extra stress for himself. Ex: on the toilet and in tears because he wasn't going to know any kids at tennis camp. Five minutes after the start of camp, he was having a blast and later talked about all the new friends he made! That's why I still hold my ground on many things and it was just gnawing on me that he's been using Crohn's as an excuse especially when I know he's doing well right now. Enjoy life. Seize the day. Viva la vida... right?

Kids!