When you are a parent of a child with cystic fibrosis, you're used to visiting your fair share of doctors and specialists.
But, what role does your pediatrician play in CF care? Who should you call when your child is sick? Whose advice should you take regarding prescriptions? What do you do if your doctors have differing opinions?
To be honest, it's complicated. Though I still don't always know where to turn, here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy:
- Your pediatrician is (probably) not a CF expert.
I've learned that despite our pediatrician's numerous accreditations and honors, cystic fibrosis is not his specialty. Although he knows an awful lot about CF, he admittedly does not know everything about the disease and there are times when I know more about drug advancements and research than he does. He can, however, basically diagnose a mystery rash over the phone and knows when my kids have strep throat just by looking at them.
- Sometimes it's a judgement call.
Balancing the opinions and recommendations of your CF care team and pediatrician can be tricky. If my kids are having respiratory or gastrointestinal issues, I will ultimately go with the CF care team's recommendations because they are the CF experts. At the same time, I appreciate the outside perspective that the pediatrician can provide about how common a particular ailment is to the average kid.
- When in doubt, call both.
I can't tell you the number of times I've not known who to call when illness strikes, but I usually end up calling both my pediatrician and our CF team. It just makes me feel better to check in with everyone.
Both practices are looking out for the best interests of my kids, so I usually check in to see if what we are experiencing is a normal kid thing, normal for a CF kid thing, or something that requires an office visit.
- They both have a stethoscope.
Well visits and even sick visits to the pediatrician give me peace of mind when he can tell me that my kids' lungs sound clear or that a cold is only upper respiratory. While he will escalate any serious respiratory issues to our CF clinic, our pediatrician can provide a preliminary status report and reach out to our CF care team as needed. It's also much easier to schedule a last-minute appointment with the pediatrician (ours also has weekend hours), which can save some worry when I'm waiting for the CF clinic to open.
- Find the right fit.
Because sticking to an accredited CF care center makes it more difficult to switch specialists, you have far more options when it comes to choosing a pediatrician. Ours played a major role in connecting us to our CF clinic during the newborn screening and diagnosis process with our son, so we felt he was a part of the team from day one.
He always makes a point to help our kids feel normal, covering general milestones, questions, and exams before asking about CF. He even asked our family if we would be willing to talk to one of his students about how we balance chronic illness with typical family life because he's so passionate about normalizing the disease for us.
- Five heads are better than one.
Our CF clinic always sends a post-visit report to our pediatrician, which means that -- in addition to the care team reviewing my kids' charts -- there's another set of eyes looking over blood work, vital signs, and prescriptions. Sharing this report also makes it much easier on me because our pediatrician has a list of all current medications and CF concerns on hand.
At the end of the day, having too many great doctors is definitely a problem I'm willing to have! By working together and keeping everyone involved in my children's care in-the-know, I feel confident in my kids' health care providers and their ability to continue keeping us on a path of good health.
What are some of the ways you partner with your pediatrician and CF care center?