Jennifer's Story

Clinical Trial Story
My son Christopher is 11-years-old and has Crohn’s disease.  He was recently diagnosed this past January of 2018 at age 10.  Up to this point in time he always had a few issues when it came to his digestive system. Ever since he was born he’s suffered from constipation. Sometimes mild and sometimes more severe, we tried over the years to treat this, but nothing ever worked. He’s never had a good appetite and much of the time exhibited difficult behavior which I attributed not only to his strong will, but also to him not ‘feeling well’.

I have Crohn’s disease myself, so always watched him especially in this area. During the latter half of 2017 some undeniable symptoms set in and he began showing clear signs that something indeed was wrong. Suffering from weight loss and lack of growth, he also appeared anemic and fatigued and began having abdominal pain. I took him to his pediatrician and she ran several blood tests and referred him to a doctor at Riley Children’s Hospital in Indianapolis, IN.

The doctor saw him within just a few weeks and directly scheduled Christopher for both an endoscopy and colonoscopy.  Following those tests, the doctor spoke with me confirming the diagnosis of Crohn’s Disease. Chris was prescribed a steroid which he began taking that day.  He was then scheduled for an MRE which showed active Crohn’s in his small intestine.  We discussed options with the doctor and after some research and consideration I decided to have Christopher begin his treatment with a biologic.  Within a few weeks of being diagnosed Chris received his first biologic infusion and the positive results were immediate.  His abdominal pain was gone, his iron levels began rising, his bowel movements became regular, his energy returned, he began gaining weight, and for the first time in his life he had a bit of a healthy appetite.

When we were to begin biologic infusions, we were introduced to our clinical research coordinator, and she made us aware of several clinical trials that Christopher was eligible to participate in.  She provided us with a lot of information, went over what his participation would require, explained the trials, and answered many of our questions.  Christopher and I decided to participate in all the clinical trial opportunities available to him, hoping that any and all data and his experience could provide, would be helpful in learning more about how Crohn’s Disease and different treatments affect these young lives.

As far as clinical trials go, I really had no preconceived ideas, fears, or hesitations about them.  I have never had any experience with them or really even heard about them before.  Like my son, I also was diagnosed with Crohn’s Disease at a young age.  To have him go through this 30 years later made me think about how far the treatments, medications, information, and knowledge about Crohn’s Disease had come.  What if more kids my age had been involved in clinical trials 30 years ago?  Would it have changed any of my son’s experience with his diagnosis and treatment?  What if his participation in these trials now could make a difference in the future for the life of his own child who may someday have Crohn’s Disease, not to mention countless others he may never even meet?

To me it seemed perfectly acceptable to have my son participate in any and all clinical trials that he qualified for.  I completely trusted the fact that his treatment and care would not be affected by whether or not he joined in the trials.  We were given enough information and resources to make informed decisions that both he and I were comfortable with.  I have been satisfied with our experience thus far, and I would have no hesitation in considering different and additional clinical trials in the future.

If you are considering having you or your child (or other patient in your care) take part in a clinical trial, I believe it is important to have an open discussion with your clinical research coordinator, doctor, and also your child (or patient).  Make an effort to educate yourself on both the risks and benefits, and make sure you are comfortable with the level of participation required.  Remember that these clinical trials, when matched with the right patients and situations, can be very beneficial in forwarding the research and development of new and effective treatments for IBD.