Caring for a child with exocrine pancreatic insufficiency (EPI) due to cystic fibrosis (CF)

Jennifer:

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.

Use

CREON® (pancrelipase) is a prescription medicine used to treat people who cannot digest food normally because their pancreas does not make enough enzymes.

Important Safety Information
What is the most important information I should know about CREON?

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 healthcare professional (HCP) gave you. Call your HCP right away if you have any unusual or severe: stomach area (abdominal) pain, bloating, trouble passing stool, nausea, vomiting, or diarrhea.

What should I tell my HCP before taking CREON?
Before taking CREON, tell your HCP about all the medicines you take and all your medical conditions, including if you
are allergic to pork (pig) products; have a history of intestinal blockage or scarring or thickening of your bowel wall (fibrosing colonopathy), gout, kidney disease, or high blood uric acid (hyperuricemia); or are pregnant, plan to become pregnant, are breastfeeding, or plan to breastfeed.

How should I take CREON?
Take CREON exactly as your HCP tells you.
Always take CREON with a meal or snack and enough liquid to swallow CREON completely. Do not crush or chew the CREON capsule or its contents, as this may cause irritation in your mouth or change the way CREON works in your body. Talk to your HCP or consult the CREON Medication Guide for how to take CREON if you have trouble swallowing capsules.

What are the possible side effects of CREON?
CREON may cause additional serious side effects, including:

  • Increase in blood uric acid levels (hyperuricemia), including pain, stiffness, redness or swelling of your joints.
  • Allergic reactions, including trouble with breathing, skin rashes, swollen lips, or itching. .

Call your HCP right away if you have any of these symptoms.

The most common side effects of CREON include blood sugar increase (hyperglycemia) or decrease (hypoglycemia), pain in your stomach, frequent or abnormal bowel movements, gas, vomiting, dizziness, 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.

These are not all the possible side effects of CREON. For more information, ask your HCP or pharmacist.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1‑800‑FDA‑1088.

If you are having difficulty paying for your medicine, AbbVie may be able to help. Visit AbbVie.com/PatientAccessSupport to learn more.

Please see full Prescribing Information, including Medication Guide, provided at CREONinfo.com.