Live2Thrive®: What if My Baby/Child Isn’t Gaining Weight?

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Sometimes, people with CF still have trouble gaining weight and growing. This can happen even after taking pancreatic enzymes and eating a high-calorie diet. It's not always possible for children with CF to meet their dietary needs eating by mouth alone. If your child is struggling to gain weight, your CF care team may suggest gastrostomy tube feedings (G-tubes) to help your child get to a healthy weight, especially when they are ill. G-tube feedings are usually done at night. Extra calories gained from
G-tubes can lead to weight gain and growth, improved energy and self-image, better lung function, and the ability to fight infection.^1,2

G-tubes can sound scary at first, but inserting the G-tube is usually an easy outpatient procedure. Your child's CF care team will work with a gastroenterologist (GI) and make suggestions about G-tube feedings based on what is best for your child's individual needs.^1,3

The information in this section is intended for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your qualified healthcare provider with any questions you may have regarding a medical condition.

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G-tube FAQs^3-5

Here are some common questions people have about G-tubes. Always ask your doctor or CF care team if you don't understand something or have additional questions.

What is a G-tube?

G-tubes help give extra calories to people who struggle to gain weight. A GI places a small tube through the skin into the stomach. At night, a longer tube is connected and attached to a pump that gives a high-calorie formula to your child when sleeping. In doing this, it's possible to get an extra 1,000 to 1,500 calories during the night.

Is it OK to eat with a G-tube in?

Yes. The G-tube feeding is not a replacement for daily food but a supplement, most often given at night.

Are pancreatic enzymes still needed with G-tube feedings?

Yes. Many patients take a dose of pancreatic enzymes before and after the feedings as they would for a normal meal. Your CF care team will explain how to give your child pancreatic enzymes during G-tube feedings.

How long are G-tube feedings?

Feedings are usually completed during sleep, but your CF care team can help you make a G-tube feeding schedule for your child.

How long does the G-tube stay in?

The G-tube will stay in only as long as your child needs it. Your GI can help determine when it's no longer needed. Most often after the G-tube is removed, the hole closes over in a few days. In some cases, it may take a few weeks to close. Surgery is not needed in most cases.

Is traveling with a G-tube OK?

Generally, yes. Remember to take all the supplies needed for feeding. Opened formula can be stored in a cooler in the summer to prevent it from spoiling. Some patients keep a small kit that is filled with supplies needed for travel.

What if the G-tube comes out?

If the G-tube falls out, the opening will not close up right away. A new G-tube should be put in within 2 to 3 hours. If you are unsure of what to do or how to put it back in, call the GI or go to the emergency room at your local hospital.

References: 1. Cystic fibrosis and nutrition. KidsHealth website. http://kidshealth.org/en/kids/cystic-fibrosis.html. Accessed May 1, 2016. 2. Supporting nutrition: understanding tube feeding. Cystic Fibrosis Foundation website. https://www.cff.org/Living-with-CF/Treatments-and-Therapies/Nutrition/Understanding-Tube-Feeding/. Accessed May 1, 2016. 3. Managing treatments: nutrition: tube feeding. Johns Hopkins Cystic Fibrosis Center website. http://www.hopkinscf.org/living-with-cf/managing-treatments/nutrition/tube-feeding/. Accessed May 1, 2016. 4. Interventional radiology: placement and care of your gastrostomy tube. Health Facts for You. UW Health website. http://www.uwhealth.org/healthfacts/radiology-invasive/5899.html. Accessed May 1, 2016. 5. A guide for parents G-tube care at home. Children's Hospitals and Clinics of Minnesota. http://www.childrensmn.org/manuals/pfs/homecare/196854.pdf. Accessed May 1, 2016.

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