12 year old w/Crohns

Hi everyone! I've been on the forums for ages, & "graduated" from the UC forum to the ostomy forum this past April. I've been really happy with the ostomy, glad I am all done with IBD. So I thought..... in the most typical twist of fate, my 12 year-old daughter was diagnosed with Crohns in September. She's currently on Flagyl & Delzicol- started w/Pentasa, swithced to Delzicol, but I think we may switch back to Pentasa. Doing ok, not great yet. 6mp will be next step, we see her GI in January, & have phone contact with him too. She's been looking for a forum for teens with Crohns- we can't find a single one! They all have 13 year-old age limits, this one included. I told her to fib, but she's more honest than me, apparently! Do any of you know of any forums for kids & teens with Crohns, preferrable an active forum? She could really use some kids her own age to talk with. Thanks... hope you all are as well as can be!

Well I know there's a Crohn's subreddit (/r/crohnsdisease), and I know there's a subreddit for teenagers (/r/teenagers)

"As per reddit's privacy policy, if you are under 13 you require parental consent to post on this subreddit as of 15th May 2013."

"Although we welcome users from all walks of life, our site is not aimed at children, and the United States government has put limits on our ability to accept users under a certain age through the Children's Online Privacy Protection Act of 1998. Individuals under the age of 13 may not create an account with us. If you believe someone 12 or younger is using our site without parental consent, please contact us."

Since you're giving her consent I don't think there's an issue. Might want to make an account and PM an admin and ask. You should, however, keep a close eye on her activity there. Reddit has some extremely inappropriate/disturbing nooks and crannies. She sounds like an honest kid, though, so you could probably tell her to ask you before she goes to other subreddits, which should keep her out of the worst places.

anyway while it wouldn't be exclusively kids her age, I think she could find some. And maybe they'd know of a more specific community.

Hi Eva Lou!! So glad you're doing well (sorry you had to pay the price with surgery as a result) terribly sorry to hear that your young daughter is now DX with Crohn's, that's heartbreaking!!!!

I hope she's able to find a forum suited to her needs, I can't even imagine going through this as a child, being a young adult when I got sick was bad enough, my heart really hurts for kids that get this DD...I wish you both well.

Hi Eve Lou,

I'm just sad that IBD exists period and that you and anyone else has to take such drastic measures to get their life back cuz of this DD....but I guess the bottom line is, you're doing very well since having your surgery and your daughter at least has a perfect support system via you, I just wish this disease didn't affect kids, it's such a tough disease at any age but children with IBD has always tugged extra at my heartstrings cuz I couldn't imagine having it start ripping my life apart during childhood.

It's nice to see you around, just wish it wasn't under the circumstance of your poor daughter :(

I hope you guys find an online support group that will be sufficient for your daughter, as we all know, this disease sucks but at least there's some comfort in being able to share with others in the same boat.

My 12 yo son was also diagnosed in sept/oct this year. I don't know of any kid specific forums...sorry. We are currently on Pentasa, going for second follow up week after Christmas, we shall see how he's doing at that time. At last follow up, things were moving in the right direction. Good luck to you both. Let me know if you find a forum..

Eva Lou, he's doing ok on Pentasa, slightly loose stools, no blood, not many symptoms, although he's never really had many serious symptoms. At last appt, about 5 weeks ago, his blood work, calprotectin abd weight were all going in right direction. We go back again next week. If dr. Does not see more improvement, he will move to remicade....hoping the Pentasa is doing the job. We will find out..

Eva Lou:
Sorry you are going through this. My 11 y.o. son was also diagnosed this year with Crohn's. He, too, is on Pentasa and Prevacid (and Omega 3 and multivitamin). Waiting on newest fecal calprotectin results--fingers crossed they are going in right direction. If not, I think the next step is to move up the scale of meds. While I'm sure Remicade would help immediately, I hesitate to put him on something like that so soon, which he'd be on for the rest of his life, without trying other options first. He's doing well so far--gaining weight, no other symptoms (other than abnormal fcp level), etc. that it's hard to think of using the "big guns" as you state. That's not to say we wouldn't if we had to--absolutely--but we're just a bit more conservative in our approach. I don't know if that's right or wrong, I just know that it's what works for our situation. And, since every situation is different, it's right for us. Ok, sorry for the long-winded reply.
Good luck finding a forum--please let us know what you find out.