Parents of a child with Crohn's

[jenandcraig]

My husband and I are parents to a 15 year old boy who was diagnosed with Crohn's Disease a year and a half ago. We are wanting to learn more about how to help him deal with this disease physically and emotionally as well as how to make correct decisions about his medical treatments.

 

[my little penguin]

We have a very active parents group of kids with ibd
Found
Here
http://www.crohnsforum.com/forumdisplay.php?f=49

Tagging crohninct
Maya142
Jmrogers
Clash
Tesscom
All have teenagers with crohns
My kiddo is 11 and was dx at age 7.

 

[Jmrogers4]

Welcome JenandCraig
I have a 16 year old son diagnosed at 10 with Crohn's disease. You have found a great place filled with knowledgeable people. As MLP says we have a very active parent's section here.
We are happy to help, give our two cents with whatever questions you might have.
What meds is your son on?

 

[Maya142]

Hi and welcome JenandCraig.
I have an 18 year old daughter who was diagnosed at 16 with Crohn's Disease. She is currently on an Anti-TNF and an immunomodulator and is doing well. Do you have specific questions that you want answered? The parents' section has a lot of great info - research, experiences of parents etc. It was an incredible help when my daughter was first diagnosed and I was clueless!

Hang in there!

 

[jenandcraig]

My son has been taking 6mp since diagnosed a year and a half ago. He has grown and has gained weight. He looks great on the outside. He still complains of stomach problems and has bouts of diarrhea and constipation. But he can function and goes about all of his normal activities of school, golf, and cross country. Calprotectin tests showed very high levels. So, the doc ordered another colonoscopy which we had done this past week. Results showed that there is indeed quite a bit of inflammation. On Friday we met with the doc who wants us to begin a different medication plan...go off of the 6mp and begin with either Remicade or Humira. I have done a lot of reading about these drugs and am very, very concerned about the risk of cancer...T cell lymphoma. What I have read, it has occurred especially in adolescent males, who have been on or currently taking them along with 6mp. I am absolutely terrified of cancer and am thinking that he is doing ok on the 6mp and perhaps we can keep with our current treatment. The doctor disagrees. I'm looking for any advice/experience anyone can share.

 

[Jmrogers4]

Alright I have experience with that, my son was on Imuran for several years after diagnosis. We thought it was doing the job but MRE showed otherwise and there had been simmering inflammation going on. Inflammation equals damage which can lead to a whole host of other problems some quite critical.
We made the difficult decision to switch to remicade and trust me I had read and heard all about the risks, even his GI told me as a doctor he can see the very small increased risk but not something that he would even really consider under his doctor hat but as a parent he can understand that any increased risk is too much. That being said the risk is really quite small. I think MLP has the exact one but it's like 2 in 100,000 for the average population and 4 in 100,000 for some one that has been on 6MP/Imuran.
There is much greater risk we take in just sending them out the door everyday but we do it for the quality of life.
I can tell you my son still did all his normal activities, played football, baseball, sang in choir and went out with friends and always said he felt okay. He was reluctant to go on remicade as well. He know says it is the best thing ever that even when he thought he felt well, he didn't realize he didn't fell well until now when he really feels well and has no symptoms and leads a normal life of a 16 year old boy. No diarrhea, no constipation, no stomach pains. Nothing!
What was once a extremely scary drug for us now I just pray it keeps on working but I totally get it's easy to say that in hindsight and I was once there where you are trying to make that decision and all these wonderful people told me the same thing I'm telling you I still had a hard time saying yes. It's almost easier to make those decisions when your child is in crisis and you just want them better but when they seem to be doing okay it's easy to say well things are good we can just keep going.
Inflammation leads to damage and damage can lead to surgery and other complications even death unfortunately it is one of those things we must think about when making all these difficult decisions.

 

[Maya142]

This is a great presentation that talks about the risks and the benefits of various IBD meds. The risk of Lymphoma is very small - 2 out of 10,000 in the general population and 4 out of 10,000 on a biologic.

For my daughters, biologics have been miracles. They both have a form of inflammatory arthritis, and the younger one also has IBD. They became close to normal teens once we put them on biologics. My older daughter went from being in a wheelchair to being a normal college student who plays soccer. The younger one is still a work in progress in terms of her arthritis, but within 8 months of Remicade, her colonoscopy showed a "beautiful" colon. Her TI still had a bit of mild inflammation, but there was quite a difference. Her Calprotectin is 26 now!

I agonized and agonized about putting my daughters on biologics but in the end, the risks of the disease were much scarier than the risks of treatment. With IBD you risk strictures, fistulas, abscesses, growth failure etc. and around 75% of patients with Crohn's have surgery within 5 years of diagnosis. Biologics reduce that risk.

Wanted to add that both my daughters say they can't imagine life without biologics. They've had NO real side effects from Remicade/Humira, besides some fatigue after Remicade infusions, which only lasted for a day.

Good luck!

 

[Maya142]

This is the presentation: http://programs.rmei.com/CCFA139VL/

 

[araceli]

Welcome to the forum. I am the mother of a 19 year old girl, Dx at age 14. Remicade since 3 years ago and in remission. I was very scared to put my Daughter on biologics, now I am very glad I made that decision.