Cystic Fibrosis Information for Parents
If you have a positive newborn screen
If you have had two abnormal newborn screens the Cystic Fibrosis Coordinator will contact you to set up a sweat test. Most likely, this will be scheduled for the following Wednesday during CF Clinic. On that morning, do not put any lotion on your baby's arms or legs. Be sure to bring blankets, hats, or jackets - something to get your baby warm enough to sweat. Also, please bring a photo ID, insurance card and guardianship and custody papers, if a legal guardian other than a parent accompanies the child.
What to Expect at your Clinic Visit
When you come for your visit, you will go directly back into a clinic room. People with CF should not go to the waiting room. The registration process will take place in your room. Once you are registered, nursing staff will begin getting your height/weight, vital signs and medical history. If you are old enough (usually around 5 yrs old) you will be taken to the Pulmonary Function Test (PFT) room for a breathing test. You will meet the doctor and the rest of the CF team in your room. You may even meet Darby, the clinic dog - she makes frequent visits to patient rooms on Wednesdays! Before you leave, we will collect a throat or sputum culture to see what germs you might be growing.
Each year, we perform routine lab work and tests. This helps us get a baseline to compare tests to if you get sick. This also allows us to catch potential problems that are typical with CF patients. This can include vitamin levels, chemistry panels and blood counts. When you are old enough, we will start doing glucose tolerance tests for CF-related Diabetes. We will also have you get a chest x-ray each year and sometimes an abdominal ultrasound. When you turn 10 years old, we will start having you go across to Fort Sanders Regional to have a Dexascan. This may seem overwhelming, but we will keep track of when everything is due and what you need - in fact, we will even make you an age-appropriate binder with education and other helpful materials in it. We will help schedule all of these tests for you. If you are getting blood work done in clinic, the child life specialist will be there to help keep you occupied!
Bring with you:
- A full list of your most current medications or you may bring the medications in their bottles for us to see. Especially your enzymes!
- Your vest or any airway clearance device
- A Photo ID
- Insurance Cards
- Anything else that you want the CF team to see that you may have questions about
Your phone calls and requests are very important to us. If your child is sick, try to call as early in the day as possible so we can consult with a physician and if your child needs to be seen. If this is an emergency, please do not leave a message, call 911 or come to the emergency department.
When to call: If your child is sick with cold symptoms or increased cough, nasal congestion or drainage, call the CF Center. You should also call the CF Center if your child is having stomach aches or cramps, constipation or trouble passing stools.
Things to know when you call:
- symptoms and how long they have been going on
- what has worked in the past
- any antibiotics at home
- pharmacy number or address
If you need prescription refills:
Before coming to your clinic visit, please check to see which medications you might need refills for and notify the nurse or provider. We will be happy to fax or e-scribe your prescriptions to specialty pharmacies, just remind us!
If you need refills between clinic visits, please call the Pulmonology Office at (865) 637-8481 and leave a message on the CF line.
It is not uncommon for our CF patients to get admitted to East Tennessee Children's Hospital. This can happen as a sick visit from a clinic, through the Emergency Department, or it can happen as a scheduled event for a bronchoscopy, PICC line placement or other procedure.
If you have a scheduled bronchoscopy:
You will start in Surgery, located in the South Tower. They will call you prior to the procedure to remind you what time to show up, where to go and when to stop eating (or g-tube feeds) the night before. They will also ask you for updated medical information when they call. After the procedure, if you need to be admitted you will go to 3-West.
If you are sick and need to be admitted:
You will almost always be admitted to 3-West from the office, clinic or the emergency department. There may be some circumstances that this doesn't happen; for example, if the admission is related to complications from sinus surgery, you may go to the inpatient surgery floor.