Caring for a child with exocrine pancreatic insufficiency (EPI) due to cystic fibrosis (CF)
Sabrina was diagnosed with cystic fibrosis and exocrine pancreatic insufficiency, also known as EPI, due to CF, at five months old.
Her GI symptoms were what prompted us to take her to the doctor. While it was difficult to hear her diagnosis, at least it provided us with an explanation.
We’ve been very diligent about making sure Sabrina gets the nutrition she needs. We’ve also tried to help her develop the habit of always taking enzymes when she eats.
We do things to help her remember her enzymes like keeping them on our kitchen table and always making sure she has them in her backpack when she goes to school.
We make sure to always keep her enzymes, in a cool, dry place and avoid storing them anywhere where it will get too hot.
It’s a family effort. We always make sure that we have them on us. And when we forget, we have to turn around and go home and get them.
Sometimes she’s better at remembering than I am. We’ll be out and I’ll realize I didn’t grab her enzymes. She’ll tell me, "it's all right, Mom, I have them."
When Sabrina was in elementary school, she had to go to the nurse to get her enzymes.
At that time, I helped her remember to take her pancreatic enzymes when she was at home.
When she entered junior high, she could self-carry her medication.
Since then she’s always been so good at remembering to take her pancreatic enzymes when she eats. She’s learned that if she forgets to take them, she may have some issues.
But that’s only happened once or twice because she’s so on top of it.
Sabrina is getting to be older. She’s a teenager now. It’s really important for her to take responsibility for her health. When we go to the doctor’s office, they ask her questions, and she knows her medications. She knows the names, what they’re for.
So if I wasn’t there, she would be able to step right in and take ownership and know what she needs to do to take care of herself. As a parent, it’s been awesome for me to watch her take more responsibility for her own care.
She asks questions, wants to help prepare meals. She’s even the one who reminds me about her medications now. I want to make sure I’m doing everything I can to help support her and to make sure she has the foundation to make positive choices for herself.
CREON is a prescription medicine used to treat people who cannot digest food normally because their pancreas does not make enough enzymes due to cystic fibrosis, chronic pancreatitis (which is the swelling of the pancreas that lasts a long time), pancreatectomy (which is the removal of some or all of the pancreas), or other conditions.
Important Safety Information
- CREON may increase your chance of having a rare bowel disorder called fibrosing colonopathy. The risk of having this condition may be reduced by following the dosing instructions that your doctor gave you.
- Do not crush or chew CREON capsules or its contents, and do not hold the capsule or capsule contents in your mouth. Crushing, chewing, or holding the CREON capsules in your mouth may cause irritation in your mouth. Talk to your doctor or consult the CREON Medication Guide for how to take CREON if you have trouble swallowing capsules. Always take CREON with a meal or snack and enough liquid to swallow CREON completely. Take CREON exactly as your doctor tells you.
- Tell your doctor right away if you have unusual or severe: stomach or abdominal pain, bloating, trouble passing stool, nausea, vomiting, diarrhea, worsening of painful, swollen joints (gout), or allergic reactions including trouble with breathing, skin rashes, or swollen lips.
- The most common side effects include: increased or decreased blood sugars, pain in your stomach area, frequent or abnormal bowel movements, gas, vomiting, dizziness, or sore throat and cough.
- CREON and other pancreatic enzyme products are made from the pancreas of pigs, the same pigs people eat as pork. These pigs may carry viruses. Although it has never been reported, it may be possible for a person to get a viral infection from taking pancreatic enzyme products that come from pigs.
Refer to the CREON Medication Guide and full Prescribing Information every time you refill your prescription because information may change. Tell your healthcare provider if you have any symptom or side effect that bothers you or does not go away.
You are encouraged to report negative adverse effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
If you cannot afford your medication, contact www.pparx.org.
Please see the full Prescribing Information, including Medication Guide, provided on this website and discuss it with your doctor.