Communicating with your child's doctor: Key in getting good care!
As mentioned in my previous blog from the CDHNF's webcast the incidence of IBD in children is getting younger and younger. About 7-10% of children are now being diagnosed at age 5 or below. The cause of the increase in incidence for the pediatric population is unclear but it presents different issues and challenges than it would in the adult population.
One issue that can often be a problem with the pediatric IBD population is the ability to communicate special needs, concerns or symptoms to their physician. Dealing with doctors appointments can be intimidating for many children and especially for those with a disease that may be difficult to understand or contain that can contain embarrassing symptoms.
Parents will have to do most of the talking with younger children but it is important to get your child used to talking with their doctor as soon as it is age appropriate. You can discuss with your child which questions they are comfortable asking themselves and save the "hard" or embarrassing ones for mom or dad to ask. The more your child talks with their doctor the more comfortable they will become. Opening the line of communication can be essential in getting the entire picture to your child's doctor.
Use your child's doctor as a source of appropriate knowledge. They can often point you to valid informational sources and provide answers to nagging questions. The CDHNF webast participants noted that "a knowledgeable patient is an empowered one" and most physicians are more than happy to help you with the IBD learning curve. Bring a list of questions so that you don't forget what you needed to ask and take notes when your child's doctor gives you information. It can save you a lot of time and phone calls later.
It is important to be honest with your child's doctor about medication compliance. If your child is missing doses or refusing medications due to side effects then their doctor needs to know. No one wants to place their child on a higher level medication, that could potentially have more side effects, simply because of noncompliance. Your child's doctor may have suggestions or alternatives to lessen side effects or make the current medicine easier to take.
Maintain a relationship with your child's doctor even when your child is in remission or feeling well. Studies have shown that IBD patients who have ongoing visits with their physicians tend to have better control of their disease. It may be that signals that would indicate potential flare ups are caught sooner in patients who regularly visit their doctor for well checks. This can be especially important in the pediatric popluation which may not be as able to quickly verbalize potential problems.
Finally, if you find yourself in the care of a doctor with whom you can not communicate do not be afraid to find a new one! When it comes to getting the best care possible the way in which we communicate with our doctors is key. If you can't talk to your child's doctor, get appointments when you need them or speak to a nurse for clarification, questions or during problems it will be next to impossible to get good care.