A story of triumph over pediatric feeding disorder

Published by Feeding Matters on Feb 15, 2024

The way pediatric feeding disorder (PFD) manifests in each child is as varied as the children themselves. But so many stories of parenting children with PFD are the same.

An infant struggles to feed and gain weight. Parents work tirelessly to feed their children and juggle medical visits. They search in the dark for a diagnosis of a complex problem they don’t understand, all while feeling alone and at fault.

Raising a child with PFD is a journey that rarely has a final destination. With the right support and care, it does get easier. This is the story of one mom of a son with PFD and how she’s gone from seeking help to supporting others.

One family’s journey with PFD

boy (Julian) smiling while sitting at a table with a bowl of ice cream in front of him

From the start, Erin Avilez’s son, Julian, struggled to breastfeed and gain weight. Her doctors were concerned about her baby’s measurements throughout her pregnancy. When her amniotic sac fluid was low, Avilez was induced at 37 weeks.

Julian was born at 5 pounds and right away had trouble sucking and taking in enough food at each feeding. Avilez switched to bottles, but Julian continued to undereat. “Within the first few months, there were already red flags that he was underweight and not getting enough nutrition,” she says.

Avilez and her husband started by switching formulas to see if Julian had some sensitivity to some ingredients. Still, they didn’t see much weight increase. Things got worse when her pediatrician sent Julian to a pediatric gastroenterologist. “That’s kind of where the horror of the story started,” she says.

Julian’s pediatrician and the GI weren’t communicating or working together and sometimes had different goals. “The GI’s only goal was for Julian to gain weight and cared less about how it affected his feeding,” says Avilez.

Julian got a nasogastric tube (NG tube) at three months old. The increase in calories made him vomit a lot, and he regularly pulled the tube out. Any time he pulled the tube out, Avilez would have to call her husband to come home from work so the two of them could force the tube back in. Insurance only covered a few tubes, making this devastating ritual even more difficult. Julian developed an oral aversion that he never had before and wouldn’t even let his parents touch his face. By seven months, Avilez insisted the NG tube be removed.

When Julian’s GI recommended a gastrostomy feeding tube (G-tube) instead, Avilez knew they needed a second opinion. Julian took some formula and solid foods orally, and Avilez thought they could build on that. A new GI at Phoenix Children’s Hospital agreed.

With a new pediatrician and GI, Julian’s doctors started working on finding a diagnosis. He was also able to join their intensive feeding therapy program. “The new GI doctor we saw listened, and he offered empathy and support,” says Avilez.

When Julian was 3.5, his family finally got a diagnosis of what caused his pediatric feeding disorder. A liquid and a food study showed that he has gastroparesis, a condition where the stomach muscles do not work properly to empty waste.

Now that Julian has a diagnosis, he’s able to take medication to help his gastric delayed emptying, as well as an appetite stimulant. He also drinks Ensure Clear to add more calories to his diet. Julian has an aversion to any formula or dairy because of his early experience with the NG tube.

In the past six months, Julian was finally registered low on the weight chart for the first time. “This is huge for him,” says Avilez.

Still, says Avilez, their struggle is never far from her mind. She dreads visits to the pediatrician when she knows Julian will be weighed. “Even today, a week before his appointments, I start getting stressed out because I know we have to get on the scale,” she says.

Finding support from other families with PFD

Julian was born during the pandemic, and Avilez left her job as a social worker to take care of him and to get to all his appointments. She suffered from postpartum depression and felt overwhelmed, alone and isolated.

“I knew there has to be some type of service out there to help moms like me,” she says.

child wearing a blue hat, smiling while sitting at the table with fries

Avilez searched online and found Feeding Matters. She requested a peer-to-peer mentor and was matched with another mom who shared her experience. That empathy was powerful. “She listened to me. The first time I got off the phone with her, I started crying that somebody understood what I was going through,” says Avilez.

Avilez’s mentor also told her she was doing a great job. “Throughout this process, nobody told me I was doing a good job, not the doctors or anyone on his care team,” she says.

Avilez’s introduction to Feeding Matters was the first time she learned about PFD. “I felt so validated that we weren’t the only ones concerned about not knowing what was going on with our son and not hearing about it from our doctor,” she says.

Today, Avilez is a peer mentor to other parents raising a child with PFD. She’s grateful to have support and to be able to pay it forward. Her hope is that more clinicians and hospitals will inform parents about PFD from the start. “I wish that when you have a child with feeding difficulties, someone from the start would offer resources,” she says.

Key takeaways for supporting your child with PFD

Avilez offers the following advice to parents raising a child with PFD.

  1. Find a supportive care team: If the doctor’s not listening, find a more supportive provider. Having a good team in place makes all the difference.

  1. Trust your instincts: It’s okay to get a second opinion and ask questions. Keep advocating for your child because you know your child best.

  1. Find friends, family or a peer mentor: Find someone who will listen and understand so that you feel less alone.

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!
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.

Meet Mason

Published by Feeding Matters on Oct 15, 2018

When Mason began losing weight and showing signs that he had stopped growing at just a few months old, his doctor recommended that it was time to see a specialist. His parents were devastated to learn that their baby was failing to thrive. After doing everything they possibly could to help him, they decided it was time to have a g-tube put in. Throughout the next few years, Mason went through feeding therapy, which he successfully completed.  Mason’s mother recalls seeing a drastic change in her son, who has since recovered and now enjoys eating foods orally.  

My Journey with Mikarah

Published by djennings on Nov 16, 2018

I am a mother of four children. My youngest child, Mikarah, was diagnosed with feeding difficulties, better known as failure to thrive, at about 8 weeks of age. She was born at 35 weeks and it was a pretty normal pregnancy. I breastfed, but she was not gaining weight.

The first thing doctors do is try different kinds of formula or to make the formula high in calories. In my daughter’s case, she still was losing weight. We were sent to a GI doctor to get a better understanding of why she could not gain weight. She was diagnosed with aspirating and laryngomalacia, which means floppy airway. Therefore, by this time, they place an NG through her nose to go to her belly. They reinsured us as parents that she will be able to feed and get all her nutrition and she should gain weight.

We tried this solution and it did not work. After she turned four months, she was pulling out the tube and pulling the tape from her face. This was a very emotional and overwhelming time in our lives, trying to understand what her condition is and what will be the best and safe solution. It almost feels as if you become an overnight nurse. You have to learn how to place the NG, how to remove it, and how to bandage it down. I spent a lot of time at the hospital, staying the night, and waiting for the lab to do more blood work. It is a very long process. We made trips to the hospital to see our family doctor, the new physician, and the GI. We were trying to find the reasoning of this failure to thrive while having NG placed. In our case, the next phase of this is the G tube or Mickey button.

We live in Indiana. We were seen at a different hospital several times. The doctor comes to our room. They said they have done all they could and the next phase would be placing a Mickey.

I, as a parent, had no idea what a Mickey was and to have a small 4-month-old child go through surgery to me was scary. Then, to tell me I don’t have a choice was even scarier. At that time, I didn’t have any resources on what a Mickey was. I didn’t have enough time to consider whether or not my child really needs to have this. So, I asked to discharge my child out of ICU to get a second opinion at a different hospital, 3 hours from where I live. The staff contacts Child Protective Services because pulling a child out against medical advice is not suitable.

Because my child was a failure to thrive patient, she was detained. My child was not on the growth chart, so she was considered malnourished because she was not gaining weight at the hospital or at home. Despite this, CPS still felt the need to interfere and I was charged with four counts of child neglect and child endangerment.

Remind you, as a parent I have the right to seek better or other treatment that is in the best interest of my child. They detained my child and sent her to the original hospital to give their opinion on her condition. By this time, I am in court fighting these charges and hiring a lawyer. Long story short, I was able to get all charges dismissed and was cleared from these charges. The courts found these charges unsubstantial. By this time, my daughter had a G-tube placed she and she started gaining a few ounces a week.

My daughter just turned a year old. She’s only 16 lbs. and it has been a very slow process. I don’t want my story to discourage parents. Instead, I hope that my story could help someone better understand his or her options as a parent and that you never forget that you are your child’s voice.