Your First Clinic Visit
At your first clinic visit you will meet with the Nurse Coordinator, Dietitian, Respiratory Therapist, Social Worker and your Physician.
Pediatric Patient Service Coordinator:
The patient service coordinator gathers information necessary to register patients that are seen in the CF clinic at LPCH (for example: your child’s name and date of birth). Once things are verified including your insurance information they will contact you to schedule an appointment and provide directions to the CF clinic. If your child needs to have a sweat test performed (a standard non-invasive diagnostic lab procedure) it will be scheduled. The coordinator will try to arrange it to be done at your first clinic visit. The patient care coordinator is available to help with any issues that arise in regards to insurance or medication requests.
Pediatric CF Nurse Coordinator- Mary Helmers, RN, BSN
Pediatric CF Clinic Nurse-Elizabeth Beken, RN, BSN
The Nurse Coordinator/Clinic RN will introduce the CF team members that will be caring for your child. Mary or Liz will explain each of the team member’s roles and provide you with contact information for them. A patient binder will be given to your family to keep all the clinic visit materials in an organized fashion (for example: educational flyers, laboratory results, research information). All families are encouraged to bring this binder along with you to all clinic visits and/or to any other medical appointments.
A new patient teaching booklet and DVD about Cystic Fibrosis is distributed at the first visit. Families’ are encouraged to read through the materials, jot down questions they may have, and ask them at their next clinic visit. Parents are discouraged from browsing the internet for information about CF. Parents are encouraged to call the CF Nurse line at 650-736-1359 with any questions that may arise once you leave the visit and before returning to the CF Center for follow-up visit.
On your newborn’s first visit, I will begin by introducing myself to your family. I’ll let you know that I am a Respiratory Therapist and I am here to help with education about nebulizer use and airway clearance therapy for home. I’ll also assist with obtaining the equipment needed for these treatments. As their child gets older, I will be performing spirometry on them. Spirometry is a painless measurement of lung volume and flow. Finally, I will be obtaining a sputum specimen by placing a suction catheter through the nose and into the lungs of their child. We will be periodically checking for bacteria in the lungs by suctioning for the first six months. When their child is six months old we will get sputum with a throat gag, similar to the test for Strep throat.
The first visit following the diagnosis of Cystic Fibrosis can be a stressful and overwhelming time. This is also the first time that all of the team members have a chance to introduce themselves to the family. So as not to overwhelm the family further, my interaction with the family may be short during this first visit, mainly an introduction and a brief instruction on how to add salt to the infant’s diet. Behind the scenes however, I am looking at the weight of the infant and comparing it to the infant’s own birth weight and to national standards (the growth chart) to see if the infant is growing and gaining weight well. Most infants at this time are primarily breast fed or are receiving standard infant formula. Usually within the first few weeks after our initial visit we can determine if the infant needs more calories to support growth and weight gain. If this is the case, we may supplement breast milk with formula to make it more calorie dense.
Some infants present with pancreatic insufficiency. These babies have malabsorption and present with loose oily stools. They require enzyme therapy in order to properly digest their milk. I may provide instruction on how to give enzymes. All of our newly diagnosed infants are evaluated for their pancreatic status through a stool study that looks at the amount of enzymes present in the infant’s stools.
Although our interaction may be brief during the first visit, I see our patients at each visit and continue to evaluate growth and weight gain and to provide dietary guidance. My goal is to promote overall good nutrition, which optimizes lung health.
Social Work- Debbie Menet Landi, LCSW
When a new diagnosis is made, it is common for families to feel shocked, overwhelmed, scared, confused, and lost. Social workers in a medical setting help families adjust to illness by making sense of new and oftentimes confusing medical information, providing support, and assisting with resources in an effort to remove barriers to care.