JMRogers - reply to post about teens in Kimmidwife's thread

[Patricia56]

Ah teenager. Got a couple of those.

Well, it's on him then isn't it? And I would put it right back on him. Do not turn this into a power struggle. You have/will have enough of those without making this one of them. You need to be his ally in this, not his enemy.

So my suggestion (based on at times painful personal experience) is that you go for a walk or go shoot hoops or something that is physical but not too intense, chat with him a little about small stuff and see if he brings up the drinking formula thing. You'd be surprised at the things kids will tell you in situations like this. If he doesn't bring it up himself you can try to gently broach the subject. You know your kid best. With mine I might just observe that it's sure unfair that he got Crohn's. Fairness is a huge issue for my teen and that would hit him where he lives. Then I would wait and see what he said in response. Hopefully it would create an opening for you to talk about how you can support him in beating Crohn's. (see below).

If he didn't respond I would let it rest for a day or two and then I would sit him down and you say something like:

You are the one paying the price, You are the one whose gut is going to suffer, You the one whose not going to grow as well as you might, whose brain is not going to develop properly, who won't be able to play all those video games with the same speed and precision as your healthy, well nourished friends.

I love you. I am your biggest fan. It is so unfair that you have this disease but I know you can beat it. What do you need from me/us to beat this thing? How can we help you?

Obviously you will need to tailor the message to your kid and your situation but you get the idea. You treat him as a responsible almost-adult person, seriously, straightforwardly, honestly.

You have to deliver this in a compassionate but detached way. It is really hard to practice compassionate detachment with your sick kid. But by the time he is 18 (think how soon that will be) you will no longer have the power to make medical decisions for him. You need him to have lots of chances to make decisions and screw up while he still has you and his ped GI to help him learn painful lessons.

Hopefully he will talk to you frankly and you will be able to work something out with him. Be prepared to compromise, to recognize his issues and concerns (my friends aren't drinking this stuff I'll be embarrassed if they find out = solution is to do it to bulk up), to let him lead the way and ask him to come up with solutions to his problems as much as possible.

If he doesn't know anyone else with IBD then you may want to point him to the CCFA website for teens with IBD which includes a chat feature I think. You may also want to look into sending him to summer IBD camp somewhere so he can connect with other kids with IBD.

Good luck. Hope this helps.

 

[Jmrogers4]

Patricia - You are awesome. He does go to Camp Oasis every summer and loves it, comes back ready to do whatever it takes to feel great. Then life happens and he generally feels pretty good so feels he can just ignore the disease. Not totally he is not out eating popcorn, seeds or things like that. He just doesn't eat. We are talking 1/2 a hamburger and he is full.

He is such a good kid for the most part does what is asked of him, gets good grades, and is always helping out friends, I guess he just doesn't see the value in it as in Dr. told me I will grow eventually (this was when he was 10)
Just get frustrated as with most teen things and I always tell my husband to pick his battles with him and unless it is a danger to his health, he needs to make some decisions and suffer the consequences. Frequently tell both boys you may choose your actions but not your consequence and if you choose good actions good consequences happen and vice versa with bad.

I think you are right I need to step back tell him consequences of each action and let him choose. I just don't want him to suffer lasting damage because of it.

 

[jmckinley]

Wow! This is so where we are too. Thankfully, Ryan is fairly compliant with treatment, shakes, etc. I will say, having Ryan's GI as an ally has been a blessing. The GI actually started the "You are going to be in charge of your own health soon" conversation about a year ago. Then I could continue the conversation reinforcing what the GI said. He often addresses the conversation about choices to Ryan too and engages him in the conversation.

Love the suggestion Patricia 56. I may make Ryan read it just for the heck of it!

 

[Jmrogers4]

Thinking I may call the GI before we go to next appt. and tell him my concerns about eating/weight so he can talk to Jack about it. I know he was concerned at last appt. and gave us a bunch of drinks to try and even talked about giving him some kind of appetite enhancer. He doesn't have another appt. until June though baring any bad flare/set back etc. Not sure if 6 months will make a difference or I should call him about weight now.

 

[my little penguin]

You could ask the ped for a weight check - docs like official numbers then when you call the Gi after the weight check you can state be weighed x amount at the peds.

My oldest aslo has the few bites and full issue. ( no Ibd there) - has the Gi ever tried a ppi???( Prevacid etc)
At least with my oldest when he is under medicated for stomach issues then he gets full fast
Add Prevacid and a need to buy more food.
Good luck
Glad mine is still 9 and likes his shakes

 

[Jmrogers4]

Yes, we were on omeprezole dint seem to make any difference in appetite - good news is we just came back from the store and he picked out 2 flavors he is willing to give a try of Ensure and promised me he would drink them whether he liked them or not
Baseball starts soon and he moves up to the bigger field this year. So he needs to be able to throw farther with accuracy and bat farther, which means he needs more strength, he was asking me about going to work out and I told him I would not take him unless he was consuming more nutrition it wasn't safe for his body.
Keeping my fingers crossed that he decides it is worth it to drink them. I'll keep suggesting just like I ask him if his homework is done

 

[Patricia56]

I vote for an earlier GI visit to discuss his weight and whether he is physically approved to pursue varsity level (or whatever they call it) sports at this time.

And there may be gastroparesis issues happening where his stomach isn't emptying fast enough in which case he will need to eat small amounts more often.

I would suggest that he try drinking the Ensures the way I described rather than chug them or drink them fast to get them down. It would be better for him to get accustomed to the taste so he can handle it without distress.

JM - Don't you dare show my post to your kiddo!!!:voodoo: :lol:

Not only is it spilling our secrets, in my experience it made my kids really uneasy when they had actual proof that I was talking about them online. If you share that post you may find that your child lets you know he doesn't want you telling anyone anything about him. Ever.

But that just might be my kid.

Obviously he didn't win on that one. :rof:

 

[Jmrogers4]

We mixed a peach ensure (clear) with yoplait smoothie mix and he is really liking it Has been sipping on it for the past hour and is nearly done. Not as many calories as traditional ensure but I'll take it at this point.
Thanks for the info on gastroparesis I had never heard that but he does not have bowel movements everyday, never has since he was a baby more constipation - would that signal that as well.
That is another way we have been able to tell when he is flaring he is going everyday sometimes 4-5 a day.
I think I will call the GI, baseball assessements are the end of February and I would like a plan before then.

 

[Jmrogers4]

Called the GI today and spoke to the nurse, he was 77lbs on Oct. 2 and 4'11.5". He is 80lbs and 5'0" so I guess we have seen some growth and weight gain, silly me I was hoping for more. She was going to talk to the GI and just get his opinion so hoping he gives me a call, also mailing me his last labs as I can't find a copy of it.