Feeding Tube Awareness Week

Date: February 8-12. 2022

The Feeding Tube Awareness Week was created by the Feeding Tube awareness Foundation organization to increase awareness of feeding tubes and enteral feeding. The first awareness week was launched in 2011. The mission of Awareness week is to promote the positive bebefits of feeding tubes as life saving medical interventions

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent .

Reasons to use a feeding tube
The student or individual may have a swallowing disorder or dysphasia. This means there is an increase risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.
Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

The following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 Deletion Syndrome

Angelman Syndrome

Aspiration

Cerebral Palsy

CDKL5 Disorder

Cornelia de Lange

Cri Du Chat Syndrome

Down Syndrome

Dravet Syndrome

Dysphasia

Edwards Syndrome

Fetal Alcohol Syndrome

Fragile X Syndrome

Hydrocephalus

Lennox-Gestaut Syndrome

Microcephaly

Ohtahara Syndrome

PPD- Not Otherwise Specified

Turner Syndrome

Trisomy 18

Spastic Diplegia

Traumatic Brain Injury

West Syndrome

Williams Syndrome

Resources:

Resources activities held during the week can be found here: FEEDING TUBE AWARENESS WEEK 2021 – Feeding Tube Awareness Week

Book Review: My belly Has Two Buttons

Teaching Students with Feeding Tubes: What You Need To Know

If you work in a special education class or a day habilitation setting, more than likely you are teaching a student or an individual with complex needs including the use of a feeding tube.

February 8-12 is recognized as Feeding Tube Awareness Month which is a great opportunity to provide information on tube feeding in an educational setting.  According to the Tube Feeding Awareness Foundation, there are over 300 conditions that require students and individuals to receive nutritional support through tube feeding.

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent .

Reasons to use a feeding tube
The student or individual may have a swallowing disorder or dysphasia. This means there is an increase risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.
Types of Feeding Tubes

Gatro Feeding Tube

The gastrostomy tube (G tube) is placed through the skin into the stomach. The stomach and the skin usually heal in 5-7 days. This type of tube is generally used in people with developmental disabilities for long term feeding.

Nasogastric Feeding Tube

The nasogastric (NG tube)  is inserted through the nose, into the swallowing tube and into the stomach. The NG tube is typically used in the hospital to drain fluid from the stomach for short term tube feeding.

Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

The following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 Deletion Syndrome

Angelman Syndrome

Aspiration

Cerebral Palsy

CDKL5 Disorder

Cornelia de Lange

Cri Du Chat Syndrome

Down Syndrome

Dravet Syndrome

Dysphasia

Edwards Syndrome

Fetal Alcohol Syndrome

Fragile X Syndrome

Hydrocephalus

Lennox-Gestaut Syndrome

Microcephaly

Ohtahara Syndrome

PPD- Not Otherwise Specified

Turner Syndrome

Trisomy 18

Spastic Diplegia

Traumatic Brain Injury

West Syndrome

Williams Syndrome

The following are articles on IEP and Accommodations:

IEP/Accommodations

Going to school with a feeding tube- http://www.tubefed.com

Accommodations and supports for children with pediatric feeding disorders- Kids First Collaborative

School-based accommodations and supports– Feeding Matters

Tube feeding at school: 8 tips to prepare your child and school staff– Shield Healthcare

Signs and Symptoms of Issues related to a g-tube

Complications due to tube feeding may include:

  • constipation
  • dehydration
  • diarrhea
  • infections
  • nausea/vomiting

Aspiration

Aspiration can be caused by:

  • reflux of stomach contents up into the throat
  • weak cough, or gag reflux
  • the feeding tube is not in place
  • delayed stomach emptying
  • The head is not raised properly.

Students should be observed for aspiration during feeding. The following are signs and symptoms of aspiration:

  1. Choking or coughing while feeding
  2. Stopping breathing while feeding
  3. Faster breathing while feeding
  4. Increased blood pressure, heart rate and decreased oxygen saturation.

The following are articles on signs and symptoms of aspiration during feeding

Aspiration in Children

How to Prevent Aspiration

Life with Aspiration and a Feeding Tube

Pediatric Aspiration Syndromes

Tube Feeding Aspiration

Resources

Book Review: My Belly Has Two Buttons: A Tubie Story

Tube Feeding Awareness Foundation

Book Review: My Belly Has Two Buttons: A Tubie Story


Book Review: My Belly has Two Buttons: A Tubie Buttons

Author: Meikele Lee
Illustrator: Rebecca Robertson
Pages: 20

Did you know that according to the Feeding Tube Awareness Foundation, there are over 300 conditions that require children to receive a nutritional support through tube-feeding which is expected to continue to rise?  The decision to use a feeding tube can be frightening for parents, children and siblings alike. Meikele Lee, author, mom and pediatric feeding disorder advocate, wrote this book  through the eyes  of 2-year-old Nico who takes the reader through his own journey of using a G-tube describes the meaning of NPO (nothing by mouth) and his MIC-KEY. A MIC-KEY button is used to conceal the tube as well as decrease the risk of snagging and removing the G-Tube. Nico explains his day of using a feeding bag. I enjoyed reading this book. The book does a great job in describing the purpose of a  g-tube and would be an appropriate book for children new to using a feeding tube, family members including siblings, extended family member and teachers interested in expanding disability educational programs in the school.

Additional Information

Facebook

Twitter

 

26 Great Resources on Special Needs Clothing

Children and adults with disabilities with sensory issues, autism, ADHD, down syndrome and cerebral palsy often find challenges in finding clothing that meets the need of feeling good and appropriate.

25clothing.resources

Challenges may also include difficulties in handling buttons and closures. Here are 25 resources that focus on shoes, outerwear, and adaptive clothing.

Adaptive Clothing

Adaptations By Adrian- Adaptive clothing including side zippers, wide band elastic waist for custom-made capes, wheelchair, pants, shorts adult protectors and cape protecting scarf.

CAPR-Style– Located in the U.K, adaptive clothing for adults and children including feeding tube covers.

Designed By Dignity– Adaptive clothing fashion clothes for men and women.

Down Design Dream– Adapting Clothing for children and adults with special needs

Easy Access Clothing– Adaptive clothing for adults and children.

Professional Fit Clothing– Adaptive clothing for adults and children including adults bibs, clothing protectors and nightware.

Rackety’s- Based in the U.K, products include adaptive clothing for children and adults such as vests, outdoor clothing, and nightwear.

Something Sew Special– Handmade adaptive clothing for children with special needs including bibs, ponchos, bodysuits and bandanas.

Special Kids Companywhere every child should be seen and not hidden!  International provider of bodysuits for older children with special needs including PEG/tube fed children aged 2-14 years old.  Available on all Amazon platforms (.com/.ca/.co.uk/.fr/.de/.es/.it)

Specially For You Inc.– Custom clothing for children with physical disabilities. Products include night wear, dresses, tops, one piece outfits and hooded poncho’s.

Tender Ivy– Onesie garment designed for protecting vulnerable areas.

Wonsie– Based in Australia, products include special needs onesie bodysuits for older children and adults.

Sensory Clothing

Children and adults with sensory processing issues may find it difficult wearing certain types of clothing. The following stores sell items that are for sensitive skin, medically fragile and pressure points.

Cool Vest– products includes children’s cooling vest.

Independent You– Adaptive outerwear, sportswear and sleepwear.

Kozie Clothes– Adaptive medical and sensory clothing for medically fragile and special needs babies and children.

No Netz– Anti-chafe swimwear for boys and men.

SmartKnit Kids– Seamless products for children with sensory issues. Products include, socks, undies, tees and bralettes.

World’s Softest– Socks for sensitive skin

Shoes for AFO’s

The following are stores that sell shoes that fit over orthotics.

Ablegaitor- Orthopedic shoes for children. Can be used without AFO’s.

Hatchbacks– Children’s orthopedic shoes for use with orthotics.

Healthy Feet Store– An online orthopedic shoe and footcare store including AFO’s accommodations.

Keeping Pace– Children’s orthopedic footwear designed for AFO’s.

Shoby Shoes– Custom-made orthopedic shoes and support boots for special needs children

Soft Star Shoes– Will customize shoes to work wit AFO’s and DAFO’s.

Coats for Wheelchairs

Coats for individuals who use wheelchairs  made need special clothing. The following online stores, specialize in adaptive outerwear for children and adults.

Koolway Sports– Based in Ontario, Canada, Koolway Sports items include blankets, hoods, and capes.

Silvert’s– Adaptive clothing for men and women including footwear and wheelchair clothing.

Weighted Vest

Weighed vest can be used for children and adults with autism, ADHD, Cerebral Palsy, Muscular Dystrophy and a sensory processing disorder.

e-Special Needs– provides a selection of weighted vests and clothing

Fun and Function– Includes items such as explorers vest, fleece hoodies and compression vests.