• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newly diagnosed

M

Momofboycrohn

Hello guys
I'm a newbie. My 15 yr old son was recently diagnosed with Crohns. This has been a nightmare. He was in the hospital for 2 1/2 weeks when he was "officially" diagnosed and then 4 days later he was readmitted. He's been home a week on this upcoming Saturday and his second dose of Remicade is scheduled for tomorrow. I'm very optimistic, frustrated, concerned, scared I can go on and on. But I have to remain strong for my kid. Its hard watching your child suffer. I do believe he's had this since 2007 but they just recently diagnosed him.
 
ronroush7

ronroush7

Welcome. I am sorry for all that you have been through. There is a great support section in here called Parents of Kids with IBD. I am also going to tag Maya 142, Clash, my little penguin.
 
Maya142

Maya142

Moderator
Staff member
Hi and welcome! I'm so sorry you have to be here. My kiddo was diagnosed at 16. She was also put on Remicade immediately (as well as Methotrexate and Entocort) and did very well on it. Some kids respond to Remicade immediately, while others take a while, so don't lose hope yet! Is he feeling better at all?

My daughter took about 4 infusions before she felt better. We also had to increase the dose and frequency of the infusions. Kids who are very inflamed often need a high dose at first.

Check out the Parents of Kids with IBD forum. There is a lot of info there and there are some parents who have sons around your son's age. There are also LOTS of parents of kids who are on Remicade.

Sometimes steroids or EEN (Exclusive Enteral Nutrition) are used to induce remission along with Remicade.

The best advice I was given is that it's a marathon and not a sprint. The first year is the hardest for most people.

Hang in there!
 
caretothepeople

caretothepeople

It's great you found yourself here and that you are reaching out for support since it sounds like it's been difficult lately. I'm so sorry your son has been in and out the hospital. Diagnosis can be a big adjustment, however, it does mean that with an accurate diagnosis he's now on the road to getting the treatment and care he needs. Hang in there and be strong, there's a great community here with lots of info and many parents who may be able to empathize with what you're going through. It might also be worthwhile checking out the CCFA. They have lots of info on their website including some guides for parents. You can also search to see if there's a chapter in your area which could be another avenue to find support.
 
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