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View Full Version : 11 DS diagnosed w/crohns recently


leanne11
05-13-2010, 01:54 PM
have any ideas?. hes not flaming right now, but wondering what we should do when down there???he has 18 pills to dake daily now and i could do snacks but what about meals at rest..?

gamomof2
05-13-2010, 02:34 PM
Our daughter is 15 and was diagnosed last year. She has her regular meds plus her anti-diarrhea and pain meds. She tires kindof easy. She sticks to mostly white meat chicken and baked foods. It's a hit or miss with her in the parks. We make a grocery run for our kitchenette. She sometimes will just sip on a drink and eat back in the room.

Cheshire Figment
05-13-2010, 08:30 PM
I would suggest going to the disABILITIES Forum and look at Post #3 of the disABILITIES FAQs. There is a large section in that post dealing with special dietary needs, as well as many related links. You can get directly to the disABILITIES FAQs by following the link in my signature.

This is a very common topic of discussion in the disABILITIES Forum.

dvccruiser76
05-13-2010, 10:01 PM
leanne11 - So sorry to hear the news about your son. I was diagnosed in 95, but I was already 18 at the time. I can only imagine how tough it would be for an 11 year old.

My crohn's is aggrevated by stress and typically bothers me less while I am on vacation.

I'm not a great pill taker so I opt to see a chiropractor once a week instead and so far so good, though I did have surgery in 95 when I was diagnosed and everyone is different.

I pray that you have a wonderful trip and that his crohn's behaves itself so your son can enjoy himself :littleangel:

Also, as a tip, take a look at a park map before you go so you know where all the bathrooms are in case you need one quickly.

vicb
05-18-2010, 08:09 AM
My sister has had crohn's her whole adult life, my cousin does and so did one of my aunts. I am sorry to hear of your son's diagnosis. One of the best support websites is: www.ccfa.org/

Good luck with your trip planning. I'm sure you will get great tips on the disabilities board. My sister always carries a stash of "safe" snacks with her. I know disney restaurants are quite accomodating, one trip my kids only wanted plain grilled chicken breasts for dinner and we were able to order them even when not on menu (Rose and Crown, RainForest Cafe, Le Cellier etc...)

benreb
05-18-2010, 08:29 AM
Sorry to hear about your son's diagnosis. My son (now 15) was also diagnosed with Crohn's at age 11. I just wanted to let you know of a terrific support group for parents of kids with IBD. These parents have all been there, done that, and could offer you a lot of advice on traveling with your son. The site is dragonpack.com/ibdsupport/parents/

(I am unable to post a link, but hopefully you can figure out the address)

By the way, we have made many trips with my son and it hasn't been an issue. If your son is not flaring and knows which foods he should stay away from, you should be fine. As dvccruiser76 said, make sure you know where the bathrooms are. My son is in remission and I still do this when we go anywhere.

Gr8t Fan
05-18-2010, 10:34 AM
Sorry to hear about your son's diagnosis. My son (now 15) was also diagnosed with Crohn's at age 11. I just wanted to let you know of a terrific support group for parents of kids with IBD. These parents have all been there, done that, and could offer you a lot of advice on traveling with your son. The site is dragonpack.com/ibdsupport/parents/

(I am unable to post a link, but hopefully you can figure out the address)

By the way, we have made many trips with my son and it hasn't been an issue. If your son is not flaring and knows which foods he should stay away from, you should be fine. As dvccruiser76 said, make sure you know where the bathrooms are. My son is in remission and I still do this when we go anywhere.

I can second the recommendation for the dragonpack group. My DD was diagnosed with ulcerative colitis in 2001 at age 6 and the group there has been a godsend over the years. The website is www.dragonpack.com/ibdsupport/parents .

leanne11
05-20-2010, 01:33 PM
thanks guys sooo much... cruiser thanks my son is the opposite on vaca... he has been sick or ill every vaca we ever took.. sometimes on the plane before we got there.. so now we are soo happy to get an answer and tryyy to make his first trip w/crohns a success...he's on 18 pills/day so we gonna try to map out the bathrooms and stop for drinks.. he has an alarm on his whatch so he can be som what independant but i may call ahead and get some menu ideas

ROEDISNEY
05-20-2010, 01:35 PM
So sorry to hear this. He's so young. My mom & DSGF suffers to. They mange there. They know what they could and couldn't eat. Hope you have a MAGICAL TRIP.:thumbsup2