Parenting a Child Who Has Crohn's Disease

When your child is diagnosed with Crohn's disease, the first thing you think is, "Ha!" After all the wrong diagnoses, after months of trying to convince doctors that your instincts are telling you that something is wrong, finally: you have validation.

Then comes the sickening feeling when you really take in the fact that your child having an incurable, chronic disease.

Next will come the doctors. You've probably already been dealing with lots of them-- your child's primary care physician, lab technicians, emergency room doctors, specialists, medical students, and nurses galore. You've already experienced the frustration of contradictory expert medical opinions and advice, and doctors who barely glance at you and your child before departing the room in a rush, too busy to answer your questions. Now you'll get a pediatric gastroenterologist that will see your child far more frequently than your primary care pediatrician ever will.

The biggest problems you will face as a parent of a child with Crohn's? Getting the doctor(s) on the same page as you. What is the single best way to get ahead of the curve? Talk to other parents of children with Crohn's disease. Check online forums and your local Crohn's and Colitis Foundation support group. These parents will have the inside scoop on the best doctors, the newest treatments and research, and plenty of emotional support.

"Getting the doctors on the same page as me?" you wonder, assuming that your doctor's only agenda is your child's wellness, "I don't get it!" Though it would be an overreaction to think of your child's pediatric gastroenterologist as your enemy, it is good to retain healthy skepticism when your doctor makes recommendations or suggests treatments. The best thing you can do is your homework-- read the scholarly articles (they're all over the web) so that you are well-versed in the drugs and therapies used to treat Crohn's disease. Be ready to ask your doctor what he or she thinks of new studies that talk about the drugs your child takes. Understand how the drugs work. You may find that your doctor seems irritated by your questions, or eager to cut the visit short. Though doctors are certainly busy and have many patients to treat, effective communication is necessary to effectively treat your child. Lose the guilt and let the doctor know by your actions that you will not be rushed out of the office when you still have issues to discuss. The doctor is paid for an hour-long visit, and most doctors see their patients for less than ten minutes. If you need an extra five or ten minutes to ask questions, you're well within your rights to take that time. Once your doctor understands that you are an educated and involved parent, he or she will be more likely to offer more detailed explanations, rather than wait for you to quiz them.

What to do if you feel that your doctor is not effectively communicating with you, or effectively treating your child? Get a new doctor. After spending a year with a pediatric gastroenterologist who condescended to me when I attempted to ask questions, I started to think that my child's doctor might not be the best fit for my child. My suspicion was confirmed when my seriously ill child changed doctors and saw an immediate and dramatic improvement in his health. I only wish I had had the courage and self-confidence to trust my instincts. Instead, my child suffered needlessly for a year with a doctor who seemed ill-informed about Crohn's disease. Not all pediatric gastroenterologists are equal. Don't be intimidated. Your instincts are more valuable than you think.