crohns Disease in Children

Hi and welcome!

I'm afraid there is no way to tell really. Her chances are 50-50 at the moment, but things are looking up and there's more and more research done into this DD every day, so I'd stay positive about it...

Take care

My mom had CD and I have CD. My mother's cousin has CD and her son has UC. Their uncle, my great uncle was thought to have some sort of issue, but he was never diagnosed with anything. So there is obviously a very strong family history/genetic link for me. My mother and I both started to show signs around the same age, right around puberty. Neither of us were diagnosed until our first born child was 1. So obviously hormones were a factor. My disease pattern has followed pretty closely to that of my mothers, except I had my first child 10 years before my mother did, so I have had the official diagnosis longer. Also I seem to have a bit more severe case. But my pattern of flares, foods I can tolerate, medications that work, those things are the same.

However, she was diagnosed in 1965, I was diagnosed in 1988, there is a big difference in the treatments available now. I have not suffered nearly as much as she did, despite having a more sever case. I also have not had nearly as many side effects or complications as she did, simply because the doctors understand so much more about how the medications affect us and how the disease progresses. Things like resections. When my mother had her first resections, the surgeon just cut and cut and cut leaving her with little bowel. Eventually she ended up with short bowel syndrome. Now the doctors understand that the disease WILL come back and they need to leave as much as possible so that patients won't have SBS. My mother was left on high doses of prednisone for years, leaving her with mood swings, weight gain and severe osteoporosis. Advances in medicine give me hope that if my daughters are given this diagnosis one day, they will have an even easier time as well. My daughters are older than yours but they each have shown signs that lead me to believe they will one day walk this path. My younger one is 20 and is seeing my GI for the start of testing. I know its scary, but I believe that treatments have improved dramatically because I have seen it, and I keep seeing it. My life is better now than it was when I was first diagnosed. I still have lots of medications available to me that weren't there 22 years ago, and certainly were never available to my mother.

Welcome -

In general, early-onset Crohn's is associated with an aggressive disease course, particularly in children diagnosed after the age of 6. The accuracy of this conclusion is limited since there is a much smaller incidence of IBD in children under the age of 6.

You don't say how sick your daughter has been since her diagnosis or what treatment she has received. But if her disease course has been severe to date then it is likely that it will continue along that path when it is active.

The research info on familial disease patterns is mixed and very sparse at this point. So far there is no conclusive evidence that a child's disease course will be more or less severe than their parent's although the trend seems to be toward a similar disease course.

There is a lot of research being done trying to find serological and genetic indicators that will allow prediction of severity/disease course. Of these, the serological markers are so far the most clinically helpful because the genetic markers have turned out to be numerous and none so far have been shown to have a really strong affect.

Serological testing (such as the Prometheus serology testing panels) generally shows that the higher the number of markers a child has the more aggressive the disease course is likely to be.

None of this is set in stone and the biologics may make a huge difference in the impact of CD on pediatric Crohn's disease course in the long run. But it is too early to say for sure if that will be true.

I would like to invite you to check out an online support forum for parent's of children with IBD. It is not a HW forum.

www.dragonpack/ibdsupport/parents/

You may also want to look at the current clinical trials in pediatric CD and see if anyone is investigating familial inheritance patterns. Then you could either e-mail the prinicipal investigator, look for publications by that person or consider joining the clinical trial in hopes of getting the latest "inside" scoop.

Best wishes -

Patricia