Episode 33: Let’s Talk About Tube Feeding

Adequate nutrition and hydration are the foundation of health. Unfortunately, it can be difficult for people living with CDKL5 Deficiency Disorder to take in all that they need to be well nourished or to maintain their growth curve. A feeding tube can help close the gap for oral eaters and is a necessity for anyone who cannot eat safely by mouth. In this episode, we talk about different types of feeding tubes, the variety of methods that tube feeds can be administered, and the options caregivers have when deciding what to feed through the tube. You’ll hear a lot from Marissa, whose son has been tube fed for many years. She shares about their journey to the tube and how she feeds her son a homemade blended diet.

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

Cleveland Clinic Article: Tube Feeding (Enteral Nutrition)

Facebook Group Blenderized RN

Real Food Blends

Free eBook: Blended Diet Recipes (includes Marissa’s blogs)

GeneReviews: CDKL5

Kohl’s Adaptive Onesies

Book: Homemade Blended Formula Handbook

Natural Tube Feeding Course

Feeding Tube Awareness Week

RESOURCES:

Article: SickKids-led study shows success with a blenderized diet for children with G-tubes

Publication: Pureed by gastrostomy tube diet improves gagging and retching in children with fundoplication

Publication: Blenderized Enteral Nutrition Diet Study

Publication: Efficacy and Tolerance of Blended Diets in Children Receiving Gastrostomy Feeds

Publication: Health Outcomes and Quality of Life Indices of Children Receiving Blenderized Feeds via Enteral Tube