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VIDEO BLOG: MEET LUCY

Published by Feeding Matters on Jun 25, 2018

At about six months old, Lucy’s parents, Garrett and Jake, decided to begin feeding her simple solid foods like rice cereal and formula. To her parent’s surprise, the first time Lucy tried solid food she screamed and resisted. The only way to calm her was to completely remove the food from her mouth. And this was just the beginning.

VIDEO BLOG: MEET HADYN

Published by Feeding Matters on Jul 09, 2018

Pediatric feeding disorder effect every area of a child’s development, including their social, emotional, physical, and mental well-being. Today, you will meet Hadyn, who was born with a chromosome disorder called 18 Q Deletion. Hadyn’s mother knew his disorder came with complications, including hearing loss, visual impairment, and developmental delays. However, she did not expect feeding Hadyn would be so difficult.

A DAY IN THE LIFE… BRENDA

Published by Feeding Matters on Jan 12, 2018

Many people are unaware of the impact of pediatric feeding disorder. Today, Brenda shares her son’s daily feeding schedule. James, age 3, has an undiagnosed pediatric feeding disorder and relies on a feeding tube for his nutrition.

A Day in the Life… Brenda

I wake up daily at 7 a.m. and immediately place James in his highchair. Although he doesn’t currently eat any food orally, I try to instill a sense of normalcy related to mealtimes. I clean, peel, cut, and blend his breakfast of Carnation Instant Breakfast, banana, and a formula base. By 7:30 a.m., I place blended food in a bag attached to a thin plastic tube. I connect the tube to a plastic “button” that was medically inserted into his belly. Because of the severity of his condition, his food must be inserted directly into his stomach, bypassing his mouth and esophagus. Sometimes James does not tolerate his food causing him to gag and vomit. On this particular morning, James vomits. It is now 7:45 a.m., and I spend an additional 30 minutes cleaning him and the kitchen. I am deflated because he just lost so many critical calories.

By 10 a.m., I administer another tube feeding consisting of the rest of the banana, instant breakfast, and formula mix. This time he tolerates the meal! During the meal, the medical supply company delivers more feeding tubes and clean “buttons.” At 12:30 p.m., James has one of his many therapy appointments. He cries as the therapist tries to help him overcome his oral aversions. Today went well and he even put the baby food to his lips! I am thrilled. During therapy I give James his blended lunch through the feeding tube. 3 p.m. rolls around, and I give James another feeding and a round of medications through his tube. The medicines do everything from helping him combat reflux, to managing his seizures. He fights and cries again. Even though I know he needs it, it is so hard not to just let him have his way and spend this time playing instead.

Out comes the blender again at 5 p.m. Clean, cut, peel, and blend his dinner. No gagging or vomiting. He’s a happy boy! James’ last tube feeding while awake comes at 7:30 p.m. Unfortunately, he vomits and I need to give him another bath and change his pajamas. From 9 p.m. to 7 a.m., I wake up every so often to check that his feeding tube is safely away from his neck while he sleeps. He is on continuous feeds at night, meaning food is slowly being pumped into his tummy to ensure he gets enough calories. The bigger and stronger he gets, the less my inventions to keep the tube away from his neck seem to work. I would do anything for my precious son, and I will continue to fight to ensure he receives the best care possible!

MEET ZOE

Published by Feeding Matters on Jan 22, 2018

At 3 months old, Zoe began showing signs of pediatric feeding disorder – refusing to eat, arching her back, screaming, and crying at mealtimes. Her parents were desperate for help. From being misdiagnosed with aspiration to her complete refusal to eat, see Zoe’s journey with pediatric feeding disorder and her family’s search for a resolution.

WHY I AM FIRED UP ABOUT NUTRITION – FEEDING TUBE AWARENESS WEEK 2018

Published by Traci Nagy on Feb 06, 2018

As the 8th Annual Feeding Tube Awareness Week begins, Feeding Matters is honored to welcome guest blogger and constant supporter Traci Nagy. Traci is the Founder of Feeding Tube Awareness Foundation, a 501(c)(3) non-profit charitable organization and the Feeding Tube Awareness Facebook page. She is the recipient of the 2013 Lyn Howard Nutrition Support Consumer Advocacy Award from the American Society of Parenteral and Enteral Nutrition and Mom to Lucas, who is now nine.

My son was 2 weeks old when he started to projectile vomit feet across the room. By one month, he was successfully swatting a bottle out of my hand. This is even more impressive knowing now that he has global developmental delays and poor vision as a result of Koolen de Vries Syndrome. He was motived not to eat.

When he got his NG tube at 2 months old, we didn’t know the totality of his medical conditions. We just knew that he was failing to thrive, he was aspirating, had poor suck and couldn’t coordinate eating and breathing well with laryngomalacia. He was also vomiting, a lot. We didn’t yet know that his stomach wasn’t emptying or that there was a yet to be named syndrome he would be diagnosed with. I felt alone. I should have been enjoying my new baby and I was terrified.

I can still remember how it felt to have strangers stare at my newborn and wonder what was sticking out of his nose that was clearly so medical. “Is your baby OK? Shouldn’t he be in the hospital?” “Is that oxygen?” I didn’t have it in me at that time to say more or educate about NG tubes or tube-feeding or vomit, reflux and aspiration, etc. I was exhausted.

From there, were people who stared at the backpack I clipped onto the park swing or the people who thought he was on a leash when I followed my new walker carrying his feeding pump backpack. Helpful relatives who clearly thought we needed new doctors or to try harder to feed him. None of these things in and of themselves was a major affront. However, the collective experience weighs hard on you. It is like each little thing pushes you closer to the edge. There is always that lingering fear that someone is going to say something inappropriate to you or think less of your ability to parent. And, much of this happens when you are at your most vulnerable – when your child may be undiagnosed or you are still in the thick of testing and hospital stays. It happens when you need support and understanding the most.

My son would not be alive without tube feeding. He simply would have starved. I became keenly aware that there were such negative perceptions of the very thing to which I owed my son’s life.

Awareness matters. It matters that people understand something about feeding tubes other than end of life or diets for brides. It matters that they know there are hundreds of medical conditions that can lead children struggling to eat enough, and that some children need extra nutritional support through tube feeding. It matters that they realize that these conditions aren’t always visible, and that looking “typical” doesn’t mean there isn’t more going on inside. It matters that they know that the feeding tube can be thought of like any other medical device in that it helps you do what you can’t do on its own…for now. It matters that they understand that the benefit is that children get the nutrition and hydration they need to grow, develop and thrive.

Awareness means more support and understanding. People would know about tube feeding in children. It would mean being in public and being able to feed your child without comment. It would mean that strangers may ask questions, rather than make snide remarks. It would mean that when you are told your child needs a feeding tube, you may be scared, but not feel alone. It would mean that friends and family may spend their time trying to help you, or understand more about what your child is going through medically, rather than questioning your judgment or parenting skills.

Awareness is the key. How many of us ever heard of a baby or a child having such significant feeding difficulties before our kids? I know I hadn’t and it was overwhelming. If there had been a Feeding Tube Awareness Week then, I would have known I wasn’t alone. I would have known there were hundreds of thousands of people who are tube fed in the U.S. I would have known that there were resources to connect me to other parents. What if my friends and family had read an article about it in the newspaper or saw a family on TV talk about tube feeding? I wouldn’t have struggled in those early days with figuring things out on my own and dealing with my complex emotions, too.

One of the reasons I feel so strongly about sharing our stories and raising awareness is that it helps us all. It is cathartic to share our daily experiences and to be better understood. But more importantly, it builds knowledge among the general public. Awareness matters not only to us, but to those who come after us.

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If you have a child with pediatric feeding disorder, feeling overwhelmed is not unusual. Feeding Matters is committed to providing parents with the support and resources they need to deliver the best care to their children, including our parent-to-parent coaching program and on-demand knowledge center.

For more information about the Feeding Tube Awareness Foundation and Feeding Tube Awareness Week, please visit www.feedingtubeawarenessweek.org.

WHY I GIVE: SETTING THE BAR FOR EXCELLENCE

Published by Kristen French on Feb 10, 2018

It seems like non-profits have been asking me to donate for as long as I can remember. Whether I was stopped by a stranger asking for spare change outside of a convenient store, someone was trying to sell me cookies or I participated in a food drive, the request for donations was constant – even as a young adult. Now that I’m older, the requests for donations are more frequent and more personal and more of a financial commitment. In my early years, I donated from my heart – focusing on organizations that were serving a population that I cared about or supporting a cause that was personally impacting me. But today, my reasons for giving are more comprehensive. While I can’t help but be drawn to an organization that appeals to my heart, I am disciplined about only giving to organizations that are financially sound and transparent, good stewards of their resources and engage in best governance and accounting practices.

I spent over six years as an auditor and the last seven years as a consultant, working with many non-profits in Arizona, which uncovered the challenges within the non-profit community. Non-profits can experience financial challenges, just like a for-profit business. In fact, many non-profits are more exposed to economic fluctuation. Oftentimes, the need for services increase during economic down turns, while the funding sources and donations decrease. Strategic planning, financial stewardship and governance is critical to plan and protect non-profit resources. Oftentimes, non-profits have limited resources and talent to support sophisticated or robust systems that will be needed to support a growing organization. Through my career, I’ve been exposed to the inter-workings of many non-profits in Arizona, which include meeting governing boards and staff, understanding accounting practices and reviewing accounting records.

I’m fortunate to have these experiences that give me the insight to be an informed donor. However, with this knowledge comes the responsibility to only support organizations that appeal to both my heart and my head. I was introduced to Feeding Matters and Chris Linn in 2013. Shortly thereafter, I was engaged to provide accounting consulting for Feeding Matters and spent the next few years assisting in various capacities on a project basis. I’ve seen the accounting records, interfaced with most of the staff, participated in finance and audit committee meetings, attended the luncheons and listened.

Feeding Matters is setting the bar for excellence. In the accounting industry, we often evaluate the ethical climate through the ‘tone at the top’ – a term that defines management leadership and commitment towards honesty, integrity and ethical behavior. A good tone at the top permeates an entire organization and is considered a prerequisite for solid governance. I’ve known Chris Linn, Feeding Matters’ president and CEO, for over 4 years and I’m continually impressed with her passion toward the mission, while maintaining high business acumen in her execution. Chris has the experience and qualifications to effectively lead Feeding Matters, but her commitment to the cause makes her trustworthy, effective and dynamic.

Feeding Matters became personally relevant to our family in early 2014. My (then, almost 2 year old) son had a life-threatening allergic reaction, which will forever change the way our family experiences food. My son received the proper care, recovered quickly from the reaction and our family was able to find resources and be educated about allergies. Feeding Matters provided resources and Chris Linn offered personal support and guidance. Once we settled into our routine as an allergy friendly family, I realized how fortunate we were in our journey; many families don’t have answers or a diagnosis or a plan. Many families struggle daily with feeding and nourishing their children. The overwhelming impact that pediatric feeding disorder can impose on a family is heartbreaking. I am so grateful to be able to support Feeding Matters and their efforts towards identification, research and promotion of collaborative care.

As a mother of 3 (very soon to be 4) young children and a business owner, the requests for donations are endless and the options are vast. My husband and I choose to support Feeding Matters each year because they are accountable, financially sustainable, transparent, ethical, passionate and effective – we continue to be impressed and inspired by the progress Feeding Matters makes each year.

MEET NOAH

Published by Feeding Matters on Aug 27, 2018

Born at 3 pounds, 8 ounces, little Noah immediately struggled to eat and spent the first months of his life in the NICU. His parents tried several methods of getting him to eat solid foods, but at 14 months, Noah was still only drinking formula. They felt like no one understood what they were going through and that they had run out of options. His parents, Amanda and Darin, credit Feeding Matters for supporting them and recommending the help Noah needed. Noah now sees a tongue-tie specialist and feeding therapist who have helped him immensely.

SCHOOL-BASED ACCOMMODATIONS & SUPPORTS

Published by Kim Lechneer on Sep 05, 2018

Children with pediatric feeding disorder have diverse needs ranging from refusals to eat specific textures to an inability to chew and swallow that necessitates medical interventions such as tube feedings (Berlin, Davies, Lobato, & Silverman, 2009). Many underlying medical or developmental problems may contribute to difficulties with eating. Regardless of a child’s medical status or developmental course, inadequate nutrition or hydration may contribute to learning difficulties in school including, but certainly not limited to:

  • reduced concentration
  • low energy levels
  • poor stamina
  • difficulties problem-solving
  • poor frustration tolerance

As such, children with feeding disorders may be eligible for accommodations and/or special education instruction and related services. As both a school psychologist and a parent of a child with pediatric feeding disorder, I’ve had an opportunity to think deeply about school-based accommodations and supports for children with feeding needs. Below is an overview of the types of school-based plans that exist, as well as examples of accommodations and supports that may be helpful.

Children primarily receive school-based supports via Section 504 Plans (504 Plans), Individualized Education Programs (IEPs), or Individualized Health Plans (IHPs). Both 504 plans and IEPs provide accommodations for children with disabilities. However, 504 plans are generally limited to accommodations, and do not include specialized instruction or direct teaching from a licensed or certified special educator.

Children who require accommodations and specialized instruction should be referred for a comprehensive evaluation to determine whether they qualify for special education services and an IEP. Some children do not qualify for or need an IEP or a Section 504 plan, but they may otherwise have an IHP developed with the school nurse. If an IHP alone is working for a child, family, and school team, more formalized supports may not be necessary.

Families and educators often wonder what accommodations and/or services might be helpful for a child with a feeding disorder. These determinations are made by teams based on a child’s individual needs. Unfortunately, feeding therapy is not considered a related service provided in schools. However, school districts do provide related therapies such as speech and language therapy and occupational therapy as part of an IEP for educationally relevant tasks that may indirectly support a child’s feeding needs.

For example, occupational therapists may provide fine motor training to support pencil grasp, which may also support a child’s ability to hold and use feeding utensils. Similarly, speech and language therapists may help a child strengthen oral motor skills to support speech articulation, and these exercises may indirectly improve a child’s eating/feeding abilities.

Many families pursue private feeding therapy for school-aged children. Private therapists and school-based therapists should collaborate directly to discuss strategies, accommodations, and/or services that may benefit the child. Below is a non-exhaustive list of accommodations/services that families and school teams may consider when determining appropriate supports for an individual child.

Possible Accommodations/Services for Children with Feeding Disorders Who Eat Orally

  • Extra time for eating (for children with reduced endurance for self-feeding)
  • Opportunity to bring special foods from home (for children with restricted diets, food allergies, or need for specific textures/consistencies)
  • Opportunity to snack during instruction or short breaks from instruction during day for snacking (for children who may not reasonably be able to consume sufficient calories during a designated lunch period)
  • Familiar adult to provide supervision during eating (for children who are safe to eat at school per medical team but who may be at some risk for aspiration or choking)
  • Verbal or visual cues to chew/swallow
  • Verbal or visual cues to help child take appropriate drink/bite-size to prevent choking
  • Verbal or visual cues to monitor amount of food in mouth (for children who tend to “pack” food in cheeks or put too much food in mouth)
  • Use of behavioral motivators (for children who need positive encouragement to eat)
  • Use of specific chairs, utensils/cups/straws or positioners
  • Use of fidgets or other sensory supports
  • Lunch bunch group (adult supported peer group) to provide modeling and socialization during meals and snacks
  • Reduce distractions during mealtimes

Possible Accommodations/Services for Children with Feeding Disorders Who Require Tube Feedings
*Note: Children who require tube feedings at school may also eat orally, in which case any of the above accommodations may apply

  • Opportunity to administer tube feeds where the child is most comfortable (i.e. nurse’s office, lunch room, or classroom)
  • Designated support staff (nurse or trained assistant) to administer tube feeds, as needed
  • Use of specific chairs or positioners during and following tube feeds (for children who need to be in an upright position to manage reflux or other medical issues)
  • Monitoring for safety during tube feedings
  • Stoma site management by school nurse, as needed
  • Emergency plan with school nurse should the tube become dislodged at school

I encourage families to reach out to educators in their child’s school to discuss their specific concerns. School psychologists, school social workers, speech and language therapists, and occupational therapists are particularly well equipped to advocate for children and families with feeding needs. Additionally, families should also know that they can seek out the support of their child’s private therapists or consult with a special education advocate to assist them in securing necessary services.

For more information about Section 504 Plans, Special Education Services/IEPs, and Individualized Health Plans, please check out the following resources from the National Association of School Psychologists (NASP) Section 504 Plans: A Guide For Parents, Special Education: A Basic Guide For Parents, and the National Association for School Nurses. Additionally, Feeding Matters provides a wealth of information that parents can use to inform their advocacy efforts.

References
Berlin, K. S., Davies, W. H. Lobato, D. J., & Silverman, A. H. (2009). A biopsychosocial model of normative and problematic pediatric feeding. Children’s Health Care, 38, 263-282.

Additional Resources
American Speech-Language-Hearing Association (ASHA)
National Association of School Psychologists
School Social Work Association of America
American School Counselor Association
The American Occupational Therapy Association, Inc.
National Association for School Nurses
Center for Parent Information and Resources
The Center for Appropriate Dispute Resolution in Special Education

FIVE WARNING SIGNS THAT YOUR CHILD IS MALNOURISHED

Published by ASPEN on Sep 24, 2018

Proper nutrition is vital to your child’s health, growth, and development. When your child isn’t eating or getting enough calories and the proper nutrients, there can be trouble ahead. Malnutrition weakens the immune system, opens the door to infections and delays healing. Here are five warning signs that you should look for in your children. If you spot any of them, talk with a healthcare professional about your concerns.

1. Weight Loss, Slow Weight Gain, or Underweight
Children gain weight at different rates. If your child is having difficulty gaining weight or is losing weight, it’s time to talk to their doctor. Simply looking at your child is not enough to assess for malnutrition. A child who is overweight could also be malnourished.

2. Not Growing Longer or Taller
Every child is different, and your child should be maintaining his or her own rate of growth. If your child is not outgrowing clothes, this could be a sign of malnutrition.

3. Eating Less Than Usual
Watch how your child eats during mealtime. If they only nibble or take just a few bites before pushing food away, they may be at risk for becoming malnourished. If a favorite food has no appeal or at mealtime you are met with “I’m not hungry,” it’s time to investigate.

4. Not Eating Well Due to Stomach Problems
If your child experiences stomach problems, it can be difficult for them to eat well. If they say they can’t eat at all, consult a physician right away.

5. Less Active or Less Playful
Children are growing and learning new things each day. If your child has a lower activity level than normal, or is sleeping more than usual, talk with a healthcare provider.

Download a poster illustrating these warning signs at the ASPEN Malnutrition Solution Center at NutritionCare.org/Malnutrition. You can also view a video on how to talk to healthcare professionals about your child’s nutrition.

Every September, ASPEN hosts Malnutrition Awareness Week™ to increase awareness of malnutrition, offer education on its signs and treatment, and drive progress toward early nutrition intervention. This year, it’s on September 24-28. Please visit NutritionCare.org/MAW to learn more.

Mealtimes: No Magic Required

Published by Growing Independent Eaters on Oct 24, 2018

When families begin the process of weaning from feeding tubes at home, a paralysis can take place, where you feel a lot of pressure to create magical mealtimes that will hypnotize your children into eating spoonful after spoonful. But when that paralysis strikes, we have good news: creating a wean-friendly meal does not require a magic touch. It only requires you to keep the following in mind:

Remember to stage your meal.

Mealtime staging is an intentional method of food presentation that considers nutrition, efficiency, and skill development in order to optimize each meal to meet the needs of your child in that moment. So, as we wean, we pay attention to a child’s eating age (which is calculated based on the amount of time the child has been oral), while remembering that oral motor skills develop over time. Kids learn to eat by eating!

When presenting a meal for your weaning child, it’s important to present foods with the most nutrition at the easiest skill-level first. For some kids, that means that we start every meal with yogurt, pudding, mashed potatoes, hummus, or guacamole – food that offers the most calories while requiring the least amount of skill. The second part of the meal is when we’d offer the next level of nutrition at the next level of skill difficulty. This is where you might bring out soft-chopped foods – all good calories, but requiring the child to use slightly more advanced skills. Then, the third part of the meal would include strips of soft items that not only require chewing, but biting as well. These stages can be offered separately (one, and then the other), or can overlap (putting soft food on the tray while feeding purees).

Keep realistic portion sizes in mind.

When serving your child a meal or snack, it is important not to offer too much food or too many choices because this can be visually overwhelming. An easy rule of thumb when determining how much food to serve is to look at the size of your child’s hands. The amount of protein should be able to fit into one palm, and the amount of whole grain should be able to fit into their other palm. The amount of fruit should be the size of the fingers on one hand and this same rule applies for veggies on the other. So, for toddlers, this can be just a couple of teaspoons or tablespoons of food from each food group. And remember that we start a wean we are expecting zero oral intake, and as appetite awakens, our expectations evolve. These portions are a goal to wean towards.

Don’t succumb to bribing.

Unlike peeing in the toilet for an M&M or unloading the dishwasher for an allowance, eating isn’t a behavior that should be extrinsically motivated. Children are not “good” for eating, and “naughty” for not – and this is especially true for those who have been tube fed for all or most of their lives. For this population, “not eating” is a strangely appropriate response to being tube fed. Their caloric and nutritional needs are met. Their bellies are full. And not eating is, weirdly, the response we want to see when those boxes are checked. Not eating on top of full tube feeds means that your child is listening to the “full” cues that his body is sending, and is responding appropriately by not eating more.

When we forget how appropriate food refusal is at this stage, it can be tempting to introduce extrinsic motivators in order to “get” our children to eat. Sometimes, we can be tempted to resort to sticker charts or added screen time in an attempt to provide the motivation. This is something to avoid, because when we bribe our kids to “take one more bite” or to “just try it,” we can convey the notion that it’s okay to ignore the cues that their bodies are sending – and that kind of thing can hinder our long-term goals in weaning from the tube.

In the long-term, we want children to listen to their bodies. When they’re hungry, we want them to reach for foods that provide the vitamins and calories that they need to thrive! When they’re full, we want them to put the cookie down, satisfied with the foods they ate and happy to move on to the next part of their day. We want their relationships with food to be intrinsically motivated – cultivated by the foods that bring nourishment and joy, fueled by a healthy appetite.

So, are you in that place of desperation where you’re tempted to get onto Pinterest and create the most elaborate sticker chart you can find? Our advice is to walk away from the computer, and simply offer opportunities to engage with eating experiences that are joy-filled and pressure-free. Because that, in and of itself, is magical!
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Growing Independent Eaters provides expert and effective guidance for families who are ready to wean their children from feeding tubes to joyful family mealtimes. They empower parents to trust themselves and their children around food; provide personalized, detailed plans for creating positive mealtimes and introducing appetite; and offer a team of licensed support professionals to coach you through the journey. Growing Independent Eaters’ successful consultations provide an affordable, personalized, and caring path from the feeding tube to your family table.